glad I’m not alone
AnonymousMay 16, 2007 at 9:35 pm
Hello, everyone. I am new here obviously. I was diagnosed with CIDP last month on Friday the 13th. To be honest, I was relieved. It was a difficult journey to any diagnosis at all.
I had a sharp decline in health beginning in January 07. No one had a clue. Since the source of my problems was difficult to isolate, I was told more than once that it was a psychological disorder. My IVIG nurses told me that the most common complaint among CIDP patients is being told it is all in your head.
At present, I am on a lot of meds and playing the waiting game to see if the IVIG will reverse my condition. I had a slight reaction to it, but the neuro says not to worry.
OMG, it is so difficult to relate to people just how tired this makes you feel. I feel like I am moving through water all the time. And the pain is amazing. I have pain in my joints, aching pain in my muscles, pain that burns down through my arms and legs, and neuropathic pain that feels like I am a voodoo doll being jabbed with pins. For the last few days now, I have felt a slightly painful constant tingling on the left side of my face as well. There are also orthostatic issues and loss of sensation, too. Before the CIDP diagnosis, I began to wonder myself if I was losing it and making myself sick like some had suggested.
I am awaiting a referral for confirmation of diagnosis. In the meantime, can anyone out there offer encouragement or advice on coping with this? I am 35 and in the navy until they have to decide on a possible medical discharge. The last several months have turned my life upside down. This seems like a lot for a first post to me so I will sign off. Sorry if I rambled on. Whoever reads this, thanks for being there. If you have CIDP or love someone who does, I am praying for you.
AnonymousMay 16, 2007 at 9:50 pm
It sounds like you are still on active duty. Check you medical records and get copy all your shots especially if you got the anthrax shot(s). If they are talking about a medical discharge get as much help as you need to make sure they rate you condition as service connected.
Have they talked to you about NEURONTIN for the pain. It’s on the government list. [I get mine from the AF base near by]. As you might have guessed, I’m retired AF. My CIDP began very slowly and I am trying to get it rated as service connected.
As you can tell from the various posting, CIDP has many faces. All I can tell you is hang on the IVIg and the NEURONTIN may help the pain. Check in out. you can email me or send me a message if you have any questions you think I might be able to help you with.
Good luck with the docs
AnonymousMay 16, 2007 at 10:21 pm
Your IVIG nurses are correct, so often CIDP and GBS are often first diagnosed as “psychological” at first, which is such a tragedy as I believe they (the medical community) overide what WE know about our bodies. The pain you feel in the joints and muscles are actually the nerves giving you that horrible burning, jabbing and other pain! 😡 Regardless of what others say, you are NOT making yourself sick! Who really wants to feel like this? Honestly, even a [COLOR=black]hypochondriac couldnt make this stuff up. [/COLOR]
[COLOR=black]Its so amazing that we suffer through physical symptoms, knowing deep down that something is wrong, yet doubting ourselves! (not to mention what others think of us) Isnt it strange that we are relieved to have someone give it a name? Its wonderful to finally know that there is some ‘point’ that we can try to work, or focus from. [/COLOR]
[COLOR=black]Please know that this is a wonderful site where you can ask questions, vent, get support, offer suggestions ….. and whatever else it is you want to do. It is a lifesaver for so many of us, knowing we arent the only ones going through this horrible ‘thing’ in our lives. The relief some feel in knowing we arent alone, is enough to give us the lift we need to carry on fighting. Please keep us updated on your results.[/COLOR]
AnonymousMay 17, 2007 at 7:55 am
Hello BB, you are not alone, I’m new too and I’ve found a wonderful site to write and tell your feelings, we all understand you perfectly.
Last year I also was diagnosed as “psychological” and I believed it, and went during three or four months getting worst, until I finished in a wheel chair and then was when they realised it wasn’t so “psychological”.
For me it works very well the IGIV, I get it every two months, but of course I still have pain, and I like your description of “voodoo doll” , it’s perfect to explain what I feel, some times I don’t have enough with my two hands to stop all this.
Take care and good luck!!!:rolleyes:
AnonymousMay 17, 2007 at 6:26 pm
[QUOTE=Jim C]If they are talking about a medical discharge get as much help as you need to make sure they rate you condition as service connected.
Here my experience in dealing with federal burocracy: I wasn’t in the military but in the Peace Corps in Thailand in 2001, another Federal Institution. I was dealing with the Department of Labor trying to get my CIDP recognized as work related. My application and later my appeal was denied because there is no clear proof that is was connected to the many immunizations we were required or any other factor during my service. My biggest mistake was that I didn’t stress the numbness in my feet enough during the exit interview with the Peace Corps nurse. She didn’t include it in her notes. Had she done so and authorized a follow-up, I would have been covered after my discharge. She did it for my injured foot and I got an MRI and physical therapy after I returned home and Vioxx 😮 for a couple of years all paid for by Workers Comp. In addition, I had an abnormal blood test (Eosinophilia) and went through lots of expensive tests for parasites and other causes at home free of charge. Funny thing, there was not evidence that the eosinophlia was service related. It was accepted simply because it first showed up during my service. Strangely enough, CIDP also did show up first during service but that one didn’t fly … see above. Burocracy !!!
My advice to you, BB, make sure you report all your symptoms to your doc or nurse and have them document it for future reference, also as Jim suggested have it certified as service related. Saves a lot of headaches lateron.
AnonymousMay 17, 2007 at 8:18 pm
Every single description of what you feel, have felt and all have been felt by everyone here. You described it very well.
Your IVIG nurses are right in that many have been told ‘It’s all in your head’. stuff by docs. How did you get so lucky as to get the right diagnosis? Am I right that you ARE still getting IVIG now? Wow, less than 6 months from that vague term ‘onset’ to getting IVIG is beyond super, really.
As for getting reactions, many folks do get them, and there are ways to avoid them [mainly pre-medication with Benedryl, some anti-nausea meds] and for that rash, most docs never heard of some steriod oitments.
Be sure to keep a note pad handy to record what brand & how much you are given…if it’s not on the BAG, there has to be a record somewhere [it’s a blood product and the pharmacy and infusion nurses have to know and keep records] IVIG products are kept track of, pedigreed and certified better than any other medication on earth! And you know how the military loves to keep pounds of records.
Ask, and be sure to see if you can find a way to look at and get copies of the records of your medical diagnosis and treatment for future use. I don’t know if the military ‘exempts’ itself from ‘privacy’ patient records access, but everything that’s brought the docs to the conclusion for your CIDP diagnosis can be extraordinarily useful to any future doctors you see regarding your history and then future treatment. What one remembers six months later in detail gets harder the more months that go by.
As you have read, other folks have had issues that may or may not be ‘work related’. For your inquiries, be super careful in simply asking as if you ‘just want to know!’ If you find yourself wheeled or dragged around and ‘your folder’ happens to be toted along with you…well disapper and find a copy machine! Just be sure to have a personal ‘tote bag’ to stuff your copies into!
It’s for now far more important to get all the records, even on how often your poop, to get the long term poop on your miserable, and soon-hopefully not so miserable state of pain.
I hope you get better. And SOON!
AnonymousMay 17, 2007 at 11:28 pm
To all who have replied so far, thank you so much. It helps quite a bit. Most of my meds treat only the symptoms, but support treats me. It feels better than a handful of pills, way better.
I wanted to share the story of my journey to this diagnosis. This could take a bit. Most doctors don’t listen to it all, so I would like to write it down for my own peace of mind.
In June 06, I started having stomach pain. It was always on the lower left side and never went away. It would flare between small sharp pain to terribly sharp pain, but it was always there. Repeated doctor visits, negative test results, second opinions, and they eventually said Irritable Bowel Syndrome. Syndrome to me just means that they don’t know what it is but the symptoms look like something they read in a book once. Nothing they ever prescribed for this helped me.
In early Jan 07, I had a chest cold and ran fevers for 4 days. 2 days of no symptoms at all after kicking the cold, then, the fun really started. I noticed that crossing the room jacked up my pulse and made me short of breath. I went to sick call, was told I was okay, and sent home to drink lots of water. To those unfamiliar with military sick call, you are frequently told to drink lots of water and take motrin, or as we call it vitamin M. 1 week after the pulse and breathing problems, my wrists started to hurt enough to keep me up at night. I went back. A nurse practitioner(note: not a doctor) said she was very worried about me and ordered every lab she could think of. She sent me home and told me that if my wife gets so worried that she wants to take me to the ER, Just go! No questions, just go. The joint pain spread and worsened and I gradually became too weak to walk. On Jan 15th, we went and I was admitted. Many doctors, many labs, many imaging studies. All normal. I left diagnosed with possible fibromyalgia, possible POTS, and IBS. I needed a cane to steady myself when walking.
After a month on leave to recover, my joint pain had only worsened. I developed extreme motion sensitivity and orthostatic issues. My other symptoms were not responding to meds either. I was flown to the Naval Hospital in Bethesda, MD. The attending doc there swore I would not leave there diagnosed with 3 things. He was right. I left with 4. They said I had IBS, vitamin d deficiency, post viral dysautonomia, and post viral arthralgia. At least there were finally 2 positive labs. Back home for recovery.
The joint pain began to spread to my neck and lower spine. My spine became tender to the touch. 2 months after the joint pain started, muscular aches and pains started. I felt like a bruise from my hair down to the soles of my feet. Late March, on my daughter’s 16th birthday, I had a flare up of tremendous pain and sudden weakness on my left side. The left leg and arm were colder to the touch than the right. At the end of the first week of April, I began to have burning sensations shooting from my neck down through my fingers and from my lower spine down through my toes. By mid April, I began to experience sharp jabbing random pains all over. I finally saw a neuro who listened to me instead of reading the chart and asking questions that he didn’t let me answer before moving on to something else. He said CIDP.
There you have it. 10 months of problems. 4 months of steep steady decline. 1 diagnosis. Thanks for all of your advice. Here is what I learned on the journey:
1. Always believe that you know your own body better than they know medicine. A doctor’s work is called “practice” for a reason. With any luck, someday they will get it right.
2. If you think they aren’t listening, tell them it pisses you off. They are used to people deferring to their expertise. Years of study are no substitute for years of living in your own skin. I told the man who admitted me in Jan that I thought I had a neurological illness. He thought it was in my head.
3. At all times, remind yourself of this when you get discouraged. Doctors learn for years just so they can make an educated guess more accurately than you or me. Don’t forget that they can’t all have graduated at the top of their class. Someone had to finish last. They don’t print that on their med school diploma.
AnonymousMay 18, 2007 at 8:57 pm
As said, getting a copy of your records is very important. I had to hand carry mine to an off base Dr. There was a copy machine in my office…So I had a complete copy of my records. It may be harder today. Actually as I remember, you could ask for a copy of your records. That doesn’t mean they will copy everything especially if shows they made a mistake.
As noted, make sure your out processing physical notes EVERY symptom and diagnoses. Your next battle will be with the VA. I would suggest going to a DAV, AVET or America Legion service offerer for help. I might be a good idea to discuss the fissure before your separation.
I’m glad to see that you still have your sense of humor. Hang on to it 😀
AnonymousMay 19, 2007 at 9:48 am
My spinal tap showed protein levels at 55.7 with glucose level at 79. Some neuros expressed that that level is only just above lab normal. The one who diagnosed me said that it didn’t need to be very elevated to indicate a problem and that other factors need to be considered. What experience have any of you had with this? Thank you.
AnonymousMay 20, 2007 at 1:09 pm
BB, if I remember correctly, my daughter (she is a medical doctor – not a neurologist, though) told me that protein levels in a spinal tab are not necessarily conclusive for any particular disease. Results are just used along with other tests. In other words, for example if medical history, neurological exam including physical symptoms and EMG point to CIDP, a normal spinal tab does not exclude CIDP.
AnonymousMay 21, 2007 at 9:31 am
Hi Michael, my pcp dx me with cidp last month after having 5 hospital stay relapses and 7 stay at home relapses since aug 05. i have had many lps, emg/ncvs, several cts and 1 mri. the results of the lps were different each time i had one done. they ranged from 45 up to 400plus and back down again. there are gbs/cidp patients with normal protein levels. the dx is made when all results are looked at and compared to a possible baseline then all symptoms are mixed in and a dx is made after all other possibilities are knocked off. since there are other diseases with similar symptoms, the drs want to cross off the others before making a dx of gbs/cidp. getting copies of your med records is a great idea, you have the right to them. take care.:)
AnonymousMay 21, 2007 at 10:04 pm
useful in the long term. Especially if you are in a job or situation where you have to change doctors to those that meet your current needs more specifically. Many offices do not keep records for extended periods of time, some 2, 4, 6 or 10 years-once those records are shredded. They are GONE. Further some insurance companies won’t approve special testing more than X times a year or X times in Y years, unless it’s some sort of drastic situation. Having copies for you to share with docs, saves you the hassle of getting any pre-clearances by insurace for a new test[s] or plain old having it done un-necessarily.
On one occasion, my having copies of many [not all of the records] saved me time during a second opinon consult, when the records I had been assured were not only sent and received…weren’t there for the appointment. The one set of info I would not include at first is copies of any prior neuro opinons about my condition. I have found if you seek an opinon for a doc at a ‘competing’ hospital, and not plain old facts…well, that second doc has to prove the first one wrong -different approaches, philosophies, or whatever. Any new evaluations should be made on facts, test results, films and any PT evaluations. New looks at established info, and maybe updates on some tests can-not ever hurt. I consider that I am fortunate that I only have had to see six neurologists since my intitial diagnosis and current one. I know of many here and elsewhere who have been around the block by the dozens. I hope truly, that others are like you Michael, as lucky in the future. The sooner this condition is treated, the better for all!
AnonymousMay 22, 2007 at 6:16 am
First, I have confirmed that my referral request was approved to see a new neuro up at Yale Medical Center in New Haven. He is Dr. Goldstein on the advisory board for the foundation. At first, I had been told I might have to supply justification to get it through the red tape, but I have the right to confirming 2nd opinion of diagnosis. Besides that, he is on the approved provider list. Without the guidance and support of my foundation liaison up here, I don’t think I would have tried to get this done. To all other newbies, don’t be afraid to talk to your local liaison. Judging by mine, they are a treasure.
Second, I have another question about symptoms. Since onset began, my mental focus and short term memory aren’t worth a plug nickel. Long-term memory is strong as ever. I am troubled by this. I am no Einstein, but I am an electronics technician in the Navy who relies strongly on mental processes. Now, I find myself in the midst of a comedy skit where a guy walks across the room and can’t remember why he got off the couch. I try to laugh it off, but it happens too frequently for me to ignore. I usually end up joking about it to cover how embarassing it is for me. Can anyone else share on this issue? How do you cope with it?
Thanks for everything so far, friends. I am grateful for your help and support.
AnonymousMay 22, 2007 at 10:43 am
Hi Michael, yeap that sounds familiar here too. mine does get better in between my relapses. it also acts up when i’m exhausted or over doing things. my kids and i make fun of the situation, laughter is great for the mind!:D for me it just goes along with this stuff, can’t change my mind-although some drs that i’ve seen, seem to think i can.;) i use to be a great speller, good with numbers and could memorize alot of hospital patient file numbers(use to work in med records in a hospital), now i have to think about simple things like my own phone number etc. i have post it notes all over the house, not that that helps alot:rolleyes:. your memory will improve, it takes work just like the muscles in the body does. i found sudoku works well along with computer games. take care.
AnonymousMay 22, 2007 at 11:49 am
Aaaah, the dreaded short term memory loss! Sometimes I begin to speak and dont remember what I was about to say, I cant think of simple words like ‘bus’ (just an example). Its irritating when speaking to my husband because he just gets a blank look on his face and stares into the distance waiting for me to come up with the word. Its embarrassing to say the least when having conversations with friends, and if I am at an event where there is alcohol available, Im sure they think Im drunk. GBS/CIDP, the ‘gift’ that keeps giving.:D
AnonymousMay 23, 2007 at 7:56 pm
Feel horrible. My right arm and leg are way colder than the left and hurt substantially more. I have to drag my right leg when I walk. I went through this with the left side 2 weeks before my IVIG treatment. Vicodin isn’t keeping the pain down and I have slept all day today. Pray for me, if you would, and offer any advice to help me get through if you got it. Thanks, CIDP family. I am grateful for each and every one of you.
AnonymousMay 24, 2007 at 1:47 am
I am 24 and was diagnosed initially with GBS, which was changed to CIDP 6 months after my onset at the age of 20. I was in my 3rd year of college riding on a soccer scholarship and had a photography job that I absolutely loved. Never in a million years would I have been prepared to go through what I have. The last 3 1/2 years of my life were turned upside down in the most unimaginable way.
To share a little of my story, I have the relapsing form. For 10 months I steadily declined, over those 10 months I had numerous IVIG infuisions, Plasma pheresis, and IV steroids. They all benefitted me a little to slow the progression, but by the time it was time for my next treatment I was worse then I was the week before. After 10 months of declining I was a complete quadrapalegic, needed a ventilator to beathe, and a feeding tube to eat, and the muscles in my eyes were so weak that I couldn’t focus on anything. I stayed in my “living coma” for 2 months unable to communicate with anyone, but I still knew what was going on. After months of chemo I recovered just in time for my next relapse. I have suffered many relapses and am very appreciative that I am still here today. I had to relearn how to feed myself, walk again, and everything else in between that so many take for granted in their everyday lives. They told me that if I even lived through this I would never walk again. The last couple of years have been a living nightmare, but I made it through and fought like hell. I have been in remission from my last relapse for 6 months now. I can walk unassisted for miles at a time, and take care of myself. Looking at me besides my trache scar you would never know what I’ve been through.
Though I have had to suffer, I’ve learned so much. I have a completely different outlook on life, I’ve learned that you never know how strong you are until you are tested, to be very patient, and to never give up on yourself.
Welcome to our family you will meet the most amazing people here,
AnonymousMay 24, 2007 at 10:20 am
I am glad to see the support here, especially the private messages I have gotten. Thanks so much. Today is a lot like yesterday and I am still dragging my right leg. But I put a call in to the doctor to keep him updated and see if he wanted to do anything about it. A flareup like this only 3 weeks after IVIG was completed has my wife quite upset. She is a cancer survivor x5, so she hopes I don’t end up with chemo.
Hello Emily. Thanks for the posting and it is nice to hear from someone else from Missouri. Granted I lived in the bootheel 3 hours south of St. Louis, but it makes my world seem a little smaller to see a Missouri locale on the site.
Bye for now everyone. I am going to get some rest and check back in with you all later.
AnonymousMay 24, 2007 at 11:08 am
Put your wife’s mind to rest – the chemo drugs we take for cidp are a very low dose compared to what they give to cancer patients. I was on cellcept for a couple of years with little or no side effects, nothing like cancer patients have to deal with. Now, cellcept isn’t for everyone, you have to find the drug that’s right for you. 🙂
Welcome to the forum – you’re in my thoughts and prayers.
AnonymousMay 25, 2007 at 12:05 am
Just a few things about CIDP I have learned through experience as well as this forum the past 5 years. CIDP is usually dx via elevated protein levels (above 45 is normal), EMGs or nerve conduction tests, &/or a sural nerve biopsy. It is a peripheral nerve illness, so usually begins in the hands & feet & ascends from there, up the legs & up the arms. It tends to have marked overall weakness, but can also include sensory loss (usally does.)
It tends to be brought on slowly, in terms of weeks or even years as opposed to acute GBS that can be just days in onset. There is usually a fair amount of pain, but it is normally pain caused by nerve damage, that is why so many of us take neurontin. Joint & muscle pain are not as common in CIDP. It also tends to be a symmetrical illness, what is going on on one side of the body is usually the same on the other.
I only included all of this because I am just wondering if you don’t have something else also going on to cause you so much pain. Just don’t make the mistake of blaming everything on CIDP, it is possible there could be something else in addition to this. I just worry as you seem to have an extraordinary amount of pain. Fatigue & short term memory loss are associated with most of us who have CIDP, however.
AnonymousMay 25, 2007 at 7:22 pm
Pain is not commonly associated with CIDP but is associated. My many typical symptoms are among the ones you listed. The atypical nature of my CIDP with pain and dysautonomic features illustrates the heterogenic nature of the illness. Each CIDP patient has essentially their own variant of the illness. Further, the tests you mentioned are commonly used but the results of each are not the sole diagnostic factors used. Positive or negative results in each of those tests do not exclude CIDP if the patient’s entire medical history leads to that diagnosis. There is currently no exact diagnostic test or exact minutely detailed diagnostic criteria. That is why I am seeking a 2nd confirming opinion and open to new or different findings. I was initially very troubled with the diagnosis of a rare disease due to the inherent diagnostic limitations of a disease about which little is known. It was the assurance of my neuro team that I had a high number of CIDP features that led me to accept the diagnosis. I hope I did not sound argumentative. I agree with everything you said. I only meant to illustrate the multi-headed monster nature of CIDP by indicating how it avoids easy classification.
AnonymousMay 25, 2007 at 8:03 pm
is important. Should there be an auto-immune component to it is also important as it could trigger other medical issues, or if genetic – other faulty operating systems, so to speak.
It should be almost expected, in a way. You have good support here, you are getting good advice, and you are getting good treatment…the best there is for what you have.
As for that pain issue? My CIDP is primarily sensory, and it is painful, it doesn’t let up. It just comes with the territory, so to speak. Hang on, you will find the physician that helps you manage that pain. Most likely through physical therapy, medications and pain management techniques. It takes time tho. If I can manage my pain, I’m more than sure you can as well.
AnonymousMay 25, 2007 at 10:54 pm
One of my key issues has always been pain….altho how I tend to describe it is “noise”. It could be numbness that is hypersensitive, pins and needles in either or all of hands, feet, back, head…strong electrical shocks, jabbing pain in my torso, or most noisy of all…the chainsaw effect…in my hands, feet, at the joints in my ankles and wrists. Added together, they make a fairly painful stew. Docs tend to respond if you use good adjectives! 🙂
Anyway, what I have found thru research is that there are a number of CIDP variants already identified; and no doubt there will be more as time goes by. There is no commonly agreed diagnostic criteria – there are three “accepted” set of criteria, some more stringent than others.
The point of my post is that the thing that made me stop trying to get “another diagnosis”, was the fact that a great number of neurological diseases are notoriously difficult to diagnose, however, the range of treatments for alot of diseases are uncommonly similar, all the things that you talk about on this forum. Once you reach the point of PE, IVIG, neurontin for pain relief and they start talking about chemo therapy drugs — that’s all there is (for now).
My view is that each of us needs to find a combination of these things (along with physical activities) that works for us. Good luck, take heart and enjoy each day as much as you can.
AnonymousMay 26, 2007 at 12:04 am
i call my pains names too. voodoo doll pain for pins and needles, thermostatic pain for temp sensitive pain, and many others. metaphors do seem to get their attention. like when i told them i feel as if i am moving through water. helps give them a frame of reference i guess
AnonymousMay 26, 2007 at 11:41 pm
Hi BB! I’m about 20 minutes away from Emily in the St. Louis area. Just wanted to say hello. I’ve been counting my blessings this month as my IVIG seems to be working in the energy department. The swelling of my hands and feet and my body going numb is still happening, but I actually planted tomato plants today with my daughter! It was amazing and wonderful!
I have a few words of advice for you. Keep a diary. Anything that goes on write it down, even the smallest thing that you wouldn’t think is important may be. I never thought heartburn would be important, but when I mentioned it to my doctor she yelled at me for not mentioning it sooner. Make sure you surround yourself with people who will give you understanding and help. I used to be the mouth of our family but since my short term memory and words get messed up, my hubby has taken over that job. Most of our friends didn’t understand how I could look normal but complain about feeling so bad. I have gotten to the point where I feel like I don’t have to justify myself to people, if you don’t understand then I don’t need you. I know it sounds harsh but that will lead to my last bit of advice which is… don’t stress yourself out. I used to be the mom who led committees at all the schools and was always involved in something. I had to start saying no and if I think something may stress me out, I don’t do it. I know it sounds horrible, but if I start stressing I find myself coughing more, more fatigued and I go downhill immediately. I know that being chronically ill can cause stress so find yourself a good antidepressant and a good anxiety drug for those tense moments. I am not one to take many pills, however, I have my fab four with me all the time. Zofran for nausea, Xanax for anxiety, zoloft my happy pill, and benadryl for the rash that comes with the ivig.
This site has been a Godsend when it comes to people and information. I know I can come here if I have a problem and get some help. Good luck! I’ll keep you in my prayers.
AnonymousMay 28, 2007 at 10:21 pm
The whole thing about CIDP is that if, IF you’ve gotten this far in the diagnosis process, well, the rest is merely fine-tuning. You’ve read and will continue to read of good, strong, previously vital and active people, who- well just had to change how they direct what energy they have in other directions, and more wisely! Keep in mind also, that for some here it’s taken decades. That is a humbling thing to learn.
I really like what Debs called it: NOISE! There’s the ringing in the ears noise many have, there is the muscle spasming noise, the nerves doing everything except what they’re supposed to noise….and on down the complete sets of lists! And of course, let’s not forget to include all the OTHER noises the meds make or do to us….
It really is a HUGE AMOUNT to take in, on top of not being ‘normal’ like you used to be.
I’ve come to the conclusion that getting CIDP was a sort of a roll of the dice thing…The numbers just came out the way they did …just when they did. There are soo many factors such as waters, ground or environment contaminations. Food additives, genetics, vaccinations, whatever…or all that can start the autoimmune system to go attack itself. That YOU have gotten a diagnosis and the best TREATMENT now known as soon as you have is one definite plus!
Keep it all in perspective – you have had a major attack by your body to your body…It didn’t attack your brain or your central nervous system…This is not the kind of illness where there is a magic potion and boom! Back to old self. You are change by this, as we all are. How you change because of it, and what you become as a result of all the changes is up to you. What you DO in the future is still to be determined…I believe you’ve the savvy to do a good deal. You just have to put your pain on one side and focus on the other…getting better and getting on! The pain is always there, lurking, but if you allow your other self to block it in part or all…ALLOW yourself to laugh, love, smell the flowers, or just, enjoy – really enjoy! sitting in the sun! We are fortunate to have that opportunity, at least.
The more acute of the pains do decrease/abate after a while..it can be 3-6 months or a year..but they do tend to settle down in a routine, of sorts. It takes a combination of the IVIG, and finding the best pain meds for you, each with their own set of good and bad aspects. It’s all a trade-off, I hope you find your own happy medium.
AnonymousMay 29, 2007 at 2:14 pm
I am getting my first appointment arranged at Yale Med Center’s Neuro Clinic. They should be getting back to me real soon. On the downside of things, I will update you all on the current situation previously mentioned here. Last week I suffered a flareup of pain and weakness in my right side, almost exactly like a flareup on the left side a month before. The right side is colder to the touch. I’m dragging my right leg some, especially when my microscopic level of stamina runs out. I slept all the time for the first few days after it happened. Now, since yesterday, I stumble more when walking and even occasionally veer sharply to one side or the other and nearly fall. In response to this, they want me to get a vascular study worked up by a cardiologist. My kids are really worried seeing me like this and every time I have nearly fallen they have been there to see it. I don’t hide this sort of thing from them. That’s not what bothers me. When I nearly fall, I need their help to go sit down someplace. I am grateful that I sowed enough love that they are paying it back right now. I haven’t had this diagnosis very long, but relying on my children’s help like this hurts me. I don’t resent it. I guess it is as simple as being their dad and having them do so much to take care of me. It isn’t pride, I just don’t want them to have to do it. It’s a jagged little pill to swallow. Just venting and having a bad day. Thanks for all the advice everyone.
AnonymousMay 30, 2007 at 1:51 am
The kids angle is funny. I felt *exactly* like you did when my son had to start helping me, holding onto my arm to make sure I don’t fall, “catching” me if I lose my balance, and generally doing more around the house (he is 10). You definitely sowed enough love — and your kids are obviously full of compassion as well.
I agonised over whether my son was going to be the “boy with the sick mom”, and he would be emotionally scarred having only these memories (I have had this since before he was born). But this is what I have learned.
All I can say is that you are doing the right thing by not hiding it. The more they know (and I am not talking the technical details – I hardly know them!) about how you are feeling on a particular day means that you can moderate your activity with them – e.g. are you up to a game of football outside, or will we have to watch it on TV? If they don’t know; they won’t understand why you keep saying “no” to things. Soon, it just becomes another thing in their lives; not a traumatic thing, just a “fact of life”. Keep saying that to yourself – it’s a “fact of life”.
Now Mac enjoys it equally when I come to the soccer match, OR we do homework together (well — I am sure that soccer probably wins! 😀 ). Let them ask questions when they are ready to ask them, during the quiet times, and you will all be ok. And believe me, they want to help, that is what being a family is all about.
AnonymousMay 31, 2007 at 12:35 pm
Bubbleboy, In reference to your children, I wanted to respond as a child of a chronically ill parent. Please talk to your children and keep them part of this, no need to be too technical or graphic but aware. Children can hide fears very well. Encourage them to voice their fears or feelings. The more you communicate with each other the better they will cope.
AnonymousJune 4, 2007 at 6:26 pm
The cardiologist I saw today says that my spells of weakness on 1 side or the other are not vascular. He believes it is neurological in nature. Imagine that. With my family history, the idea that it is not my heart is obviously great news. But telling me that the root of my problems is a neurological disorder is preaching to the choir. Thanks for all the support everyone. I am still having a rough time these last few days but the posts here are a big boost. God bless you all.
AnonymousJune 4, 2007 at 9:27 pm
is a good thing to have checked off your list… Be sure to get copies of those ‘baseline tests’ for any subsequent visits to other specialists in the future. Vascular issues can be caused by cardiac issues, or in many cases inactivity…I too have it checked off ‘my list’ but, that doesn’t mean it might not be an issue in the future.
I tend to think of it this way…it’s one more ‘thing’ off the ‘list’!
I think kids are truly intuitive about such things, as are our pets. While you can’t explain even the basics of what is going on to your cat or dog – they simply KNOW, and are near you like glue. Kids, well, you can try to explain in the simplist of terms, and as they ask questions…well try to put it into terms they can grasp, use lots of analogies to things in their life that they can relate to… With a little practice, I bet you will be suprised at how sensible and smart they can/will be about it.
AnonymousJune 8, 2007 at 1:31 pm
Hello Everyone. I have been doing poorly the last week or so and haven’t responded too much. Thanks to those that have written posts or private messages. My wife is concerned about how I seem to be progressing downward again. She called the neuro. They are seeing me next Tuesday. I have begun to stumble a lot. I have bounced off of a couple pieces of furniture and the deep freeze in front of her and the kids. My balance and coordination are way off course. I don’t feel dizzy when I stagger around like a drunken sailor, just way off balance. Not being sure when this balance/coordination thing will go awry, I have stopped driving for the time being. My supervisor is allowing me to phone in every day. That is a big bonus to me. Being in the service, having to show up every morning just to show up was wearing me out. They are all very concerned at work and have offered to drive me in on the days when the Navy just has to have me there. They have no idea how guilty I feel not being able to contribute to the production of our lab. Not one of them has expressed anything but support though. Old friends have reached out as well. So between all of them and all of you, I feel so much support. Thanks to all of you.
AnonymousJune 8, 2007 at 7:34 pm
Remember you are part of a unit and the unit takes care of their own. Don’t feel guilt about it. Someday it may be your turn to help.
I don’t know if this will help, but my balance goes haywire if I turn my head quickly or look up. I’ve also found that a cane can help. It also has other uses like pulling things to toward you without having to get up.
Good luck on Tuesday. You and your family will be in my prayers
AnonymousJune 8, 2007 at 11:51 pm
physically…you are making progress. You are going to see more specialists, and probably even more different ones after all of that. Just be sure no one tries to ‘taper’ off IVIG or extend infusions by a couple of weeks or months…Because you’re showing signs of a ‘progression’, and the last thing on earth you need is a cut-back on the one treatment that’s given you any relief to date. To change it for less would probably be penny-wise -dollars-foolish! Talk to the physician who has been ordering the IVIG, be candid about what all is going on with you…maybe, your infusion dosages could be increased. I speak from experience, this past year I’m getting 10 mg [or is it ‘g’s] more than before.. It’s really making a difference for the better.
Some research does hint, but not emphatically, that IVIG recipients can require higher or more frequent doses over time. I don’t know of any research into this aspect going on…I’ll double check and let you know if there is… Will get back to you about it all…
As for the stumbling, foot drop and all…have you done any Physical Therapy? If you have, are you now doing any? Were you given any exercises to do at home on a regular basis? It’s easy to stop doing the silly, little strength and balance exercises-until you fall. It’s never too soon to start doing them and do them often to keep yourself flexible and able to have your muscles and tendons strong enough to help you keep from falling…Good therapists are useful also to provide you with more simple silly-seeming balance exercises…when your nerves don’t tell you where you are, well, the rest of you works overtime and that adds to your overall stress. We all know stress is the ultimate devil for CIDP.
It also sounds like the folks you work with are SMART! You have lots to give to your work and the country…even with handicaps that are temporarily slowing you down. They know that you now have limits they couldn’t imagine had they not met you. People always hear of others who have ‘perfectly’ normal lives with MS or the like, but they also don’t fully understand what it does, your co-workers are seeing a live, viable human being who has one really devastating rare neurological disease. Just being there and being tough is education enough for them.
On to the practical issues: Stumbling and going ’tilt’? Do not go almost anywhere without your cane[s] or in shoes. I am only out of ‘foot-protection’ when on that mattress or bathing. No exceptions. I was at a different doctor appt last week, I refused to take my shoes off to be weighed. I said why, and got my way. I was lucky!
Hug your wife and kids with love and appreciation. And then help them to understand what all is going on with you. The more they understand the better they can learn to help and also cope. With kids it’s good to inform them. They could pick up all kinds of ‘notions’ based on vivid imaginations otherwise.
Ok, Tuesdahy – looking for a ‘report’ definitely then!
AnonymousJune 12, 2007 at 8:59 pm
Problematic trip to Neurologist today. After a short exam, he got concerned. He says to me, your reflexes are better, but not you. So we did a nerve conduction. Within normal limits, he says. So we did MRI’s of my brain, neck, and spine. No white matter lesions on the MRI of the brain. So we did a spinal tap. Coincidentally, my head is killing me right now. Before letting me go, he says that now he is unsure of my CIDP diagnosis. He is forwarding my whole workup to a colleague at Yale Medical Center. With my peripheral nerves functioning within normal boundaries, he says that the problem is progressing and what worries him is the progression and that he and his colleague believe that my problem is in the brain or spinal cord.
So now I am confused. I may not even have the diagnosis that allowed me to find this forum and make some friends, including one very special one. That hurts. I feel separated from you all a bit now, a bit distanced from you all. Worst of all, now there is uncertainty again. With no name for my problems, what the hell is wrong with me. Additionally, there is the concern that my brain is the issue.
I am angry and swimming in confusion right now. The headache I am beginning to think is the tip of the iceberg for the infamous “pray for death” spinal headache. Thanks for the concern everyone. Pray for me, please. I need it. Thank you.
AnonymousJune 12, 2007 at 9:13 pm
I think not knowing exactly what ‘might be’ doesnt help your already stressful situation. The angst must be awful for you and I am sorry that this has happened. Please Michael, until your doc’s collegue gets back to you guys, try to pray that the Lord will ease your mind, and that you can get some stress release as well as rest, until at least the time when hopefully you get some answer from Yale. This sounds better said than done, but, my mom spoke to me one day a few months ago over the phone, and said exactly that (just slightly more eloquent than me), and after saying over and over again … “ok mom”, it finally sank in, and I did just that. Believe it or not, I did get some peace ….. I kept having to pray though 😮 , but it did help. (Sorry about the long winded story, just wish I could help ease your pain)
AnonymousJune 12, 2007 at 9:26 pm
I haven’t been posting much lately as I’ve been trying to deal with my own CIDP issues but wanted to say I’m sorry you arent getting a clear diagnosis. I do think that no matter what happens, the friends you have made here will continue to be here.
I hope things get better for you soon.
AnonymousJune 12, 2007 at 9:49 pm
You have been referred to a true specialist for a second opinion…but betwen all this, you have experienced additional foot-drop and muscle weakness….
Your head is killing you…had you recently an IVIG session? How many days past? Do you know the rates…If having it at home, home nurses try to well, ‘speed things up’ and go at rates faster than they should be….or your last IVIG is wearing off..About your MRI’s all I can say is DUH! IF you’ve CIDP you should not, would not have lesions on/in the head, neck or spine…these are eliminating factors is diagnosis…One can have good to really good ‘motor functions’ for a year plus after any onset…The nerve conduction values are your most important clue…that and the spinal and blood works that seek any auto-immune aspects.
As for anger, confusion, frustration, and impatiences? Well, I believe, if you have really, REALLY, read all posts here that are available, we are all of those as well… Ali is right..accept what IS then deal with that…then, slowly and steadily go to the next aspect/issue…then the one after that…It all may not END, but it does become, well, a habit?
It-the diagnosis, that is -could all be a possible ‘re-think’ in terms of the dreadful ‘disability – diagnosis’ and all the LTD ramifications that might mean…If I were you, I would get and contract a ‘disability attorney’ right now. If only to avoid some sudden termination and cut-off of future treatments…Believe me, I know folks on disability who have nightmares dealing with this ‘Stuff’! Get your records, get a lawyer, pay him/her to do all the work and deal with the hassles…It is worth it…best to be pre-emptive rather than down-and-out responsive when you are down to get all the best treatments you need and deserve….With the least hassle and stress. The stress is the key here.
AnonymousJune 13, 2007 at 12:08 am
I want to apologize for earlier. What I posted earlier was a little more unfiltered than I am used to writing. But believe me I have really REALLY read what others have posted here. I have perspective and faith to sustain me. There are others here who definitely have traveled their road longer than I have traveled mine. In addition, I have seen things on my road that make my journey my own. For me, if the problem is a little one I can handle why worry, and if it is a big one that God can handle then why worry. Therefore, no need to worry. I approach everything that way. At the time I wrote, my headache from the spinal tap made it hard to express that side of myself clearly. I ended up venting only the bad side of my feelings. I vented. I am not really all that stressed out. Just had a bad moment that coincided with sitting at the keyboard. OOPS.
As for the medical side of things, here are the facts. Of course, if it is still CIDP, then the MRI’s would be fine. My doc and I discussed that. And my last IVIG was in May and could have worn off, we discussed that. His questions are due to the fact that I presented almost classically with CIDP in April, and now to his eyes, I present quite differently. He thinks I may not have it, but did not rule out returning to that diagnosis. Certain things are showing up as red herrings to his perception and he wants to pursue all avenues for the sake of clarifying the source of all my symptoms should some of them be separate from CIDP or be some other disease entirely. By digging in to my past, we see problems going back 8 years that could not be explained until the most recent post viral triggered episode of January led to CIDP. So, whatever they end up finding, it may have begun years ago. I just learned to accept those things at the time they happened and didn’t associate them directly with the newer episodes. But whatever. It is what it is. And whatever it is that doctors know, they don’t know everything if they don’t know God.
More than I intended to write, but I can’t sleep and really really wanted to apologize for coming off too depressed earlier. That’s not me. That’s not who I am at all. Thanks for being here.
AnonymousJune 13, 2007 at 12:36 am
I hope I didnt sound flip when telling you what my mom said. I really didnt mean to imply that you dont have faith, I hope you didnt read that into it. I just know that sometimes its hard for me to let go and leave it in the Lords hands, it takes some reminding sometimes when I feel I need to control everything, not to mention that I am [B]the[/B] eternal pessimist!
AnonymousJune 13, 2007 at 12:32 pm
I was just explaining myself to my friends. I didn’t take anything negative from your response or anyone else’s for that matter. I would tell my family here in my home the same thing I told all of you. When I blow off steam here, I treat them with the respect of apologizing for it. So, I did that for all of you as well. Thank you
AnonymousJune 13, 2007 at 6:03 pm
Don’t apologize for posting what you were feeling — all of us have been there. The whole diagnosis phase is very difficult. All sorts of things ran through my head at that time, and they still do! The bottom line is that CIDP is so damned unpredictable that it can drive you mad. I spend the first part of my calls and appointments with my neuro asking, “so, I know you said X, but are you sure???” I did end up having anxiety issues, but doing much better now. I think that people are too hesitant to see psychiatric help sometimes. btw, I’m not suggesting that you need psychiatric counseling (at all!) this was just my personal experience.
Best wishes to you, and its not likely you’ll be banned from the site if you don’t have “our” disease, lol.
AnonymousJune 13, 2007 at 10:22 pm
I can only speak for myself, but I know I had a whopper afterwards…I just made plans to go home and sleep it off afterwards…but NO, the doc had my dear spouse [who was with me] tote me to a hospital where I got some additional and extensive additional blood work drawn…Yep, headache? Of course the two hour wait in the hospital for the blood work to be done didn’t help at all [sitting upright in a waiting room chair, no less] as a person’s supposed to lie down and do horizontal rest asap after a tap OR you get headaches. Headache? YEP.
Needless to say, I slept off the ‘headache’ but, I truly felt as if someone had whomped me with a 2X4 in the back for a few days…I was sore, but could walk and all that.
It all can put a person in a really OFF mood! But, the good part is that these pains go away…the bad part is waiting for all those tests to come back!
Will think positive things your way for the duration.
AnonymousJune 18, 2007 at 11:29 am
I have been battling the medical community for almost 3 years now and even after being diagnosed with CIDP been told that my symptoms were somatic in nature. Further conclusive tests were invalidated because they were done overseas. I still don’t have a neurologist nor has treatment started for me, I get really angry with the word “psychosomatic”.
It is the world we live in there is insanity on every corner as well as greed and selfishness and above all else the insatiable and colossal egos all around us. It used to be that being ill was seen as a problem that required that the doctor actually made sure that the patient was no longer in discomfort and actually better but in today’s world it is very difficult to come in contact with true healers in the medical community.
Stress and anger has a direct effect on your symptoms and this is a disease of the nervous system and there are real physiological psychiatric issues involved that require psychotropic mediation. My advice to you is to keep striding forward, do whatever it takes to keep faith in yourself and try your best to remain at peace.
Half the battle is the diagnosis once you know what to expect even if the nature of the expectation is the unexpected it is better than not knowing. don’t let anyone let you think that this is an imaginary condition and good luck in your journey ahead.
June 18, 2007 at 2:30 pm
Hope your day is going better today! I was wondering, was transverse myelitis ruled out? Just a thought, some of the same symptoms? Have a great day! Dawn Kevies mom 😮
AnonymousJune 19, 2007 at 2:44 am
[QUOTE=Dawn Kevies mom]Hi Michael,
Hope your day is going better today! I was wondering, was transverse myelitis ruled out? Just a thought, some of the same symptoms? Have a great day! Dawn Kevies mom :o[/QUOTE]
Thanks for the input there. I don’t believe so. I will research it a little for myself in case I need to educate a doctor. I do a lot of that lately, but then don’t we all.
Also, I want to thank everyone for their support. The last week has been all over the road, but mostly a multi car pile up. Tonight especially, I have really bad pins and needles pain. Disappointing, as this is following a good father’s day when most symptoms were under control. But even now at 2 in the morning, I just wanted to share something with all of you. It is something we all have learned the hard way. When your body is being attacked, it isn’t your body that is being tested. Your mind and soul are. Does the depression get too strong? Do you find yourself just too worn down to fight the daily obstacles? At times, it does for all of us pile up over our head. Losing friends for whatever reasons along the way. Family not understanding your condition or maybe you just get tired of them babying you, whatever. Doctors misdiagnosing you or telling you it isn’t real. Don’t lose the battle by fighting with the wrong weapons. Do what you can to fight it physically, of course, but remember that faith moves mountains and fear can kill your mind if you let it. Don’t lose heart, friends. That is why we have each other to lean on.
AnonymousJune 19, 2007 at 11:34 am
I can certainly understand what you’re going through. I had convinced myself it was in my head or it came from walking on concrete, past injuries etc. After developing foot drop on my left foot followed by my right, I finally went to my GP doctor. The neuropathy (as you know) was the worst. I felt like the target in a blind knife throwing act! The pains come on quick enough to literally scare the hell out of me. I went from my GP to the local Neurologist to the head of Neurology at Ohio State University and received the diagnosis of CIDP. Since then, I’ve pretty much been through it all. MRI’s, nerve conduction and velocity tests (those suck), bloodwork and the most recent “fix” IVig. I’d hate to scare anyone away from treatment but the IVig treatments left me with migraines, nausea and of course, dehydration. All and all, I have a good team of Dr’s. including a pain management Neurologist. My current Rx list consists of painkillers and Lyrica which works very well for me.
I was fired from my job almost a year ago due to my health. Just a guess but I believe this is illegal, at least rude? I was left to apply for SSDI which I’m happy to say, went right through. 3 months from application to approval which in Ohio, is some kind of record. I did a great deal of the prep work for the social security office and I cannot stress enough how important this is (in case anyone here doesn’t know). I’d say the main point is the treatments, IVig leaves me unable to do much of anything for four or five days. There isn’t many employers that will tolerate you being of work that long and then do it again 21 days later. It’s like asking for 13 – 15 weeks of vacation every year. I keep being asked about depression and I can safely say, I don’t have it. I bought an old golf cart and fixed it up nice so I can at least get out and run around.
Hang in there, believe it or not, there’s hope. If you’re not satisfied with the healthcare you have, see another doctor, or two! If nothing else they (the doctors) will help you understand there is a physical problem and it AIN’T in you head. Feel free to contact me, I’ll give you my email if you like. As an old hunter I can tell you, the best places to go don’t have a road or even a trail, you have to make it yourself…Dughy
AnonymousJune 20, 2007 at 3:27 am
Hi Dughy, Welcome to The Family. I can just see you plowing into a patch of brush, after that deer, in your tricked out golf cart.:D love your positive attitude! Keep up the hunt. 🙂
I was one of the lucky ones to get disability on my first try also. its just the perm disability that is taking alittle longer this time, i’m a state employee and i’m still waiting for an answer from opers. i just hope the govenor is right about the information that was stolen, about us state employees, is not going to be a problem-with my luck it will be. Take care.
AnonymousJune 20, 2007 at 3:40 am
Have they told you what other possible dxes they are considering? I know how you feel, not knowing for sure what is going on, and the drs changing the dx back and forth. Don’t get too upset by what they might say, things have ways of turning out in the long run. It just makes it harder to be prepared for the future when you don’t know what the heck you are fighting in the beginning. stay positive and you’ll be able to handle anything they might dx you with. Big Hugs! Take care.:)
AnonymousJune 20, 2007 at 10:29 am
Have they told you what other possible dxes they are considering?[/QUOTE]
As far as possible diagnosis goes, all the neuro said last week was that he believes there is a strong possibility of a brain or spinal cord disease. Specifically, he said certain signs made him think of diseases attacking the cerebellum. He is also considering that I might have very early stage MS. I had a CT that showed possible lesions but MRI appeared normal.
AnonymousJune 20, 2007 at 12:38 pm
Ok, now I know I’m not just examining myself too closely. This memory thing is scarey. Especially when you are known for your exceptional memory in the past. I do however have a funny story. A couple of months ago my furnace went out and I was alone and was afraid to relight it myself so I called the gas and electric co. who usually just come right out and relight with no problem. This time they decided that because when the dispatcher asked me what my address was and I had to put her on hold to go outside to read it off the house because I couldn’t remember it, they sent the entire fire department because they thought I got carbon monoxide poisioning. How embarressing is that! We laugh a lot about that one.
AnonymousJune 21, 2007 at 7:47 pm
Ever have a concussion in your past? If you have, you might just show lesions from that….I have had a couple and when docs look and mention spots….I pipe up that I’d concussions about x and y years ago..and that’s that… I’ve been ‘filmed’ enuf CT’s and MRI’s for other stuff/events that the docs can see nothing remarkable has changed over the years….
Sit down, wrack what brain is left [after the meds do their jobs] and work out some sort of medical life history…like when you were 5 you fell out of a tree had casts and don’t remember much else about that..etc.
That’s why it is soo important to get copies of your records and test results…Do not forget that CIDP overlaps/mimics soo many other conditions’ aspects that if the doc you see TODAY specializes in one of those other areas..You almost have to know MORE than he does about the tests that confirm diagnosis to get that treatment you need.
Dughy is right that SSDI and LTD plans really want your entire life history medically…then again for any reviews – the paperwork can be overwhelming! I’ve a friend who just got her IVIG records for LTD re-review…over 300 pages for about one year’s worth of infusions! Congratulations Dughy for getting disability approved so quickly! You are fortunate that you were diagnosed so quickly without going thru the dozens of docs so many others have.
Keep faith, good heart and a sense of humor! If this all didn’t hurt so much it could be viewed as almost absurdly funny…ya know?
AnonymousJune 22, 2007 at 9:16 pm
I went to the doctor today. He is ordering more tests before handing me off to the neuro’s at Yale Med Center. Due to degrading cognitive/memory functions, he is ordering a neuro-psych workup to document and isolate which part of the brain is causing this. Lately, my wife says I sometimes get a vacant stare during conversations. Also, I have an increasing memory problem. Additionally, I will be getting a battery of autonomic testing. My blood pressure/pulse abnormalities are of some concern to the neuro, especially since I have recently relapsed to the point of tachycardia with and without posture changes, even having episodes of tachycardia while seated or lying down. I have also begun to have pain and tingling or crawling sensations in my head and face now, which is new. I don’t know where all this is going, but I wanted to let you all know. I may or may not be posting for a few days. I feel awful and really just want to sleep. Please feel free to give me opinions on any of these things if you have experience or just have a take to offer on them. Thanks.
AnonymousJune 22, 2007 at 10:55 pm
IVIG while they diagnose? If so, you have some whopping agressive auto-immune thing going on… Ask/demand IVIG extra to stop/slow deterioration? I mean, yeah it’s expensive, but IF it keeps things from getting scary to worse it’s durned cheap compared to other options…
I am with you and for you as much as I can spare! Keep the panic I know you are going thru DOWN! Channel your mind elsewhere or your super busy nerves will feed on the fear. Fear it is. So, Change the Channel!!
AnonymousJune 25, 2007 at 9:31 am
Just read your post about the different types of neuropathic sensations you describe…. I hope your doctor/doctors are more compassionate than mine because before I knew this was a neurological condition I would use similar adjectives to describe what I was feeling on the inside of my body. Often the reaction I got was this guy needs a “psychitriast” “psychosomatic” etc etc so be careful on the language. Another thing to be mindful of is that often doctors assume that if you are feeling anything even if it is pain, pins or needles or hot/cold sensations you are feeling something that is a “good sign”.
Without a doubt some feeling is better than none but the important thing here is for the extent of time the abnormal sensations go on. For me it was 24 hours a day for now though between my neurontin, psychotropics, antispasmodics the sensations can be masked for 4 to 6 hours at a time but this is not a long term solution though it is a relief. My advice is if your body can handle it and there are pharmaceutical options that can mask the problems I would take advantage of them. Do not allow yourself to suffer for hours on end. Even with the best of meds you will still have days when nothing will help hopefully those will be a rare occurrence.
Best of luck,
AnonymousJune 26, 2007 at 10:53 am
I keep seeing a common ground statement from damn near everyone here including myself. As a matter of education every GP and specialist MUST have a certain amount of psychology in their backgrounds. While the amount of education varies as does any students decision about what they want to be when they grow up, they ALL have some. As an uneducated Electrician I can tell you this, we’re “broke” and folks, it ain’t in our heads. The simpliest circuit in the world will NOT work if the wire has no insulation. Have you ever followed a trailer down the road and seen the lights flicker off/on when it hits a bump? Well, the next time you do remember this, it’s all in your head and if you REALLY want those lights to stop, they will (yes, electrician’s take a course in sarcasm). CIDP/GBS is an neurological disease, disorder, malady, illness. Whatever title you associate with it does not change the fact that, WE’RE SICK and we didn’t invent these symptoms. The average person (especially me) wouldn’t be capable of inventing this degree of “brokeness”. Chest pain, headaches, body aches, that’s the stuff a person makes up.
The Drs. I’ve seen have done a pretty good job. I went through four of them to get a diagnosis but in the long run, it seems correct. Once again, I urge you all to keep track of the Docs you good folks see and get copies of your records. If you don’t have a day planner, get one. Write down little notes daily, how you feel, meds you take, pain levels before and after your meds. This record is for your doctors, SSDI examiners and you. The next time you have to educate a specialist, this record will be your “proof” they seem to love so much…Dughy
AnonymousJune 26, 2007 at 2:18 pm
Hello, I am very new to the forum and postings.
I also had tacycardia like bubbleboy. I was getting up to 170 beats per minute. I got it in increasing frequency and duration even after being released, and had to go to emergency (even when in hospital) to get 3-6
mg of adenisine (sp)to stop it and make it normal. I was hospitalized until
Mar 2004 and in mid 2004 I had a cardiac ablation and no more tacycardia.
I should point out I was severly parylized when I want ino the hospital,
(could move my head and neck and that’s about it) and recovered enough to
function in a wheel chair. I take ivig and it really took a long time to work.
It seems 3 neuros say its because of my blood ‘igA kappa’ antibodies resist the treatment. PE did not work at all.
Also I wanted to say to the person with a tight chest I get that, and I am
comfortable it is muscle related, like a large belt or rubber band tightening
my chest. And I am fairly certain it is related to cipd. I noticed it periodically
when I was trying to get a diagnosis.
AnonymousJune 30, 2007 at 10:20 pm
Talked to my doctor on Friday. My primary care doc. I told him that I thought it would be a good preventive measure to consider antidepressants before my anxiety over my condition became depression. So I start that on Monday. Other than that, he is trying to speed up the referral process on my neuropsychiatric tests. I am relieved that he is getting involved there. It is taking too long to get news on when the tests are. I also told him that with my progression of symptoms and lack of any real relief, I thought something like avonex would be worth a try to slow the progression. After all, I want some relief, whether they want to prescribe MS meds without a concrete diagnosis or not. I reminded myself before speaking to him that the doctors work for me, no matter how quickly they try to run through an appointment. I am paying for the time, they need to listen to me. I will run this same approach at the neuro and see what happens. What’s the worst that could happen right?
AnonymousJuly 7, 2007 at 12:45 pm
Well, I wondered in my last post what was the worst that could happen. Be careful what you ask for.
This past week my case manager called me from the navy clinic. She had been searching for my neuropsych testing referral and couldn’t track it down, so she wrote one herself to the facility they normally use for active duty referrals. She said that the neuro’s office told her that the referral hadn’t been sent yet because the dr’s dictation hadn’t been written out yet so it could be included in the referral.
Then Friday morning, my neuro’s office called. The clerk said that the neuro he wants me to see for autonomic testing won’t take my insurance. She said that he really wants me to see him and that they will take a payment plan. I told her plainly that driving across Connecticut, the office visit, plus specialized testing, all out of pocket was not going to happen. She called me back after talking to my neuro. She repeated that he really wanted me to see this guy and if I don’t he is out of ideas. This sounds like go or find a new doctor to me, but then again, I am admittedly predisposed to thinking they are full of it.
I called my case manager. I told her that with all due respect, these people seem to have all forgotten that they work for me. I am the patient and I have rights. If he wants to drop me as a patient thats fine with me. He says he is out of ideas anyway. She told me that she will discuss my case with the neuro’s office, my primary care dr and some bigshots at the clinic. She says that they will do 1 of 3 things. 1) Grant exception to policy and pay for the out of network provider to do the tests. 2) Find an in network provider for the tests. 3) Send me back to the hospital. I told her that I just want to get well. I can’t even get a med to slow the progression of symptoms, which now includes pain in my face and jaw, and another flare up has me weak on the left side. If the only way to treat and diagnose this autoimmune insanity is to go back in the hospital, so be it. She will call me on Monday.
I know many of you can relate to diagnostic bs from your docs. My mother in law spent 10 years waiting to be properly diagnosed with MS. I have only been going downhill since January and autoimmune issues are immune to regular lab tests and standard treatments. But the part that angers me is the tone the doctor took. As if I should pay 1000s to go see his colleague just because he won’t know what to do if I don’t. These people work for me. His job is to make me well. If he can’t, then get out of the way.
Thanks for letting me vent.
AnonymousJuly 7, 2007 at 2:44 pm
Hey Bubble Boy, (Michael)
Sorry to hear they’re giving you such a hard time. Stay Strong, you are doing the absolute right thing. Much better than me, I always cave… I only wish i could be like you. I admire you and only wish you weren’t in the same boat with all of us GBS’ers and CIDP’ers although I wish we all were’nt in this darn Yacht! This is a great forum and “family” to listen and come to when we need an ear or any advice at all. Please Take Care of yourself, your family, and stay the course even when it gets rough. We are all behind you. (With our canes and walkers of course! :p )
AnonymousJuly 7, 2007 at 11:10 pm
insurance plan…your ‘expert’ who appears to be out of ideas…should SHOULD provide you with acceptable approvable EXPERTS out of network that are approved with his little effort of writing the referral and doing the paper-work! Crikeys! This is becoming one hyper unnecessary mess! Not one single insurance plan has never not dealt with any such ‘catastrophic’ issues before – you need one key warm body at your insurance co dealing with your kind of issue…and we all know they pretend not to know? Whew! That is out!
As for any ’emotional stress’ one has? DUH? My doc asks me about this, and I always tartly reply: well, IF you had this set of issues, how could you NOT be emotionally taxed?….And, no thank you, I do not want to add anti-depressants to my already ‘toxic-mix’ of medications.
Back to the ultimate of basics – does this mean every prior diagnosis has been countered in some funky way? If that’s the case, I’d recommend checking out US NEWS Top 100 hospitals and then eliminate Mayo as they’ve become somewhat ultra strange conservative in IVIG therapies…don’t know why. That’d leave New York and Hopkins….All competent to give you the what all once over you need before it goes too far…and Hi enuf in status that not podunk doc is gonna say ain’ so. to…if you know what I mean….Easier to get an appointment to also….keep that in mind. Have faith, keep faith…we are with you!
AnonymousJuly 11, 2007 at 10:17 am
My cholesterol was checked recently and the total number is at 299. And they are testing my vit d levels since it was very low in Feb. I took a vit d pill for a few months. They want to determine if I have an absorption problem of some kind.
I was just wondering if anyone has any info on the relationship between autoimmune diseases and cholesterol and/or vitamin d deficiency?
AnonymousJuly 11, 2007 at 10:31 am
Michael, there is a relationship to celiac disease, which causes malabsorption problems.
“Celiac.com – The Neuropathy Association — On May 27, 2003 a link between Peripheral Neuropathy and Celiac Disease was reported by physicians at the Weill Medical College of Cornell University and New York Presbyterian Hospital, according to The Neuropathy Association. Peripheral Neuropathy, which affects up to 20 million people in the U.S., can cause pain, numbness and weakness in the arms and legs and, when left untreated, can progress to debilitation.
In an article published in today’s Neurology, five percent of all patients with neuropathy were found to also have celiac disease, which results from an allergy to gluten in bread and other wheat products, and is estimated to affect one out of every 150 people. “Based on the diagnosis, we are now able to treat a substantial number of patients with neuropathy who previously could not be helped,” said Dr. Russell Chin, the first author of the paper.
In addition, patients with celiac disease tended to have a type of neuropathy called “small fiber neuropathy” which often causes severe burning, stinging, and electric-shock like pains, but is often misdiagnosed as it is undetectable with routine tests used by neurologists to diagnose neuropathy. Approximately 16% of all patients with small fiber neuropathy were found to have celiac disease. “Many of our patients were told that there was nothing physically wrong with them, and were advised to seek psychiatric care for presumed anxiety or depression,” noted Dr. Norman Latov, Medical and Scientific Director of The Neuropathy Association, and senior author of the study. “You too would be anxious and depressed if you were in constant pain, and no-one believed you or offered to help.”
Celiac disease is known to run in families, and in several of the cases, other family members were affected. Some were erroneously diagnosed with Charcot-Marie-Tooth disease, an inherited form of neuropathy due to genetic mutations. “Not all familial cases of neuropathy are due to Charcot-Marie-Tooth disease,” noted Dr. Latov. “Peripheral neuropathy can also occur in association with other causes for neuropathy that run in families, such as diabetes or autoimmunity, for example.”
The article also notes that one third of the celiac neuropathy patients did not have any gastrointestinal symptoms such as mal-absorption, abdominal pain or diarrhea, which are associated with celiac disease. “What many people don’t realize,” notes Dr. Peter Green, Director of the Celiac Disease Center at the New York Presbyterian Hospital, and co-author of the paper, “Is that 50% of adults with celiac disease have few or no gastrointestinal symptoms, and present with other manifestations such as anemia, or as in this case, peripheral neuropathy.” Treatment consists of eliminating gluten or wheat containing foods in the diet.
At present, patients with neuropathy are not routinely tested for celiac disease. Based on the new study, however, patients and physicians should be aware that anyone with unexplained neuropathy or pain should be tested for celiac disease regardless of whether or not they have the classic gastrointestinal symptoms”.
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