glad I’m not alone

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

Bubbleboy, You’re not alone! Welcome to The Family. feel free to ask all the questions you have or vent whenever you need to. We do understand what you are going through. Take care.

BB,

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][/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][/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]

bb,

Welcome to the family. If there is anything I can do to help send me an email jerimyschilz at hotmail dot com. I am 37 and am going on year 4 with this sh*t.

Jerimy

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:

[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.
[/QUOTE]

[B]BB:[/B]
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.

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!

BB,
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 😀

Jim C

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.

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.:)

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!

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.

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

😀 (could’nt resist)

Michael,

Unfortunately I dont have any words of wisdom, just ones of consolation for the way you feel at the moment. I will be thinking and praying for you.

Michael, my short term memory has been non-existent since CIDP. Wait what was I saying, j/k. They put me on Ritalin and bam it was all better, there are other drugs that can help too. If you need anything, message me anytime jerimyschilz at hotmail.com

Jerimy

Hi,

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,

Emily

Hi,

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.

CathyB:D

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.

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.

Bubbleboy..

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.

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.

Kel

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.

Hi –
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.

Take care

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.
Telebahe

My fingers are crossed for you Michael. I agree, keep your kids in the mix, I have, and i don’t regret it at all.:)

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.

Michael,

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

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!

Michael,

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)

Hello Michael.

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.

Stacey

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.

Michael,
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!

Michael,
There is no need to apologize. This is family. Sometimes you just need to blow off steam and what better place to do it than here.

On the medical side, hopeful they will get to the bottom of it. Hang in there. You still are in my prayers.

Hi Michael

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.

Helen

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.

Hi Bubbleboy,

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.

Best Wishes,

Gopal

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 😮

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

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.

Hi Michael,
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.:)

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.
Linda

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?

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!!

Hi Michael,

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,

Gopal

To All,
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

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.

Hi Laura and welcome to the family, it’s nice to meet you.

Jerimy

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 )

Joyce

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!

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”.