Looking for answers- doctors making me feel like I am crazy
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May 28, 2012 at 4:09 pm
I really just need some help to know that I am not insane.
I have been basically bed ridden since early February when I developed pneumonia with a helping of bronchial asthma. About 2 weeks after developing pneumonia and finishing antibiotics, I started to feel very light headed and tingling in my feet moving up my legs. At the time, I still had a very bad cough and thought these were symptoms from trouble breathing. I also developed a low grade temperature which went away within a day. I assumed the antibiotics did not take care of the pneumonia and went back to my family doctor who gave me a new antibiotic, an inhaler, told me to continue the steroids, and to stay in bed… that I would feel better in a week. He told me the tingling and overall weakness and light-headiness was because I was hyperventilating (although I was confused by this because I didn’t know what would make me hyperventilate… I was pretty calm). So I did what he told me and went home and stayed in bed. The tingling continued, with varying strength. The tingling would range from pins and needles in my feet and numbness, to a feeling of bursting tingling from my chest. I was also experiencing minor lower back pain and stomach cramps.
The following week, I was still feeling pretty bad and called my doctor who sent me to a pulmonary specialist. The pulmonary specialist told me I had asthma and my bronchial tubes were very swollen which was why I found it difficult to swallow. He could not tell me why I got worse when I would try to eat from a sitting position and basically skipped passed that issue. He agreed with my primary doctor telling me the tingling sensation which was now in my feet, legs, and left hand was from hyperventilating. When I said I was not upset in any way when the tingling occurred he said there were different forms of hyperventilating… He told me to go home, start a nebulizer treatment, increase the steroids, and start several cough suppressants to help my bronchial tubes. As the week progressed, my cough did get better, but I continued to have the tingling which was increasing. At this point it would range from a mild tingling in my feet to an overall feeling of vibrations. At one point I asked my husband to check the dryer because I thought it was shaking so badly that it was causing vibrations through the floor… well, the dryer wasn’t on. It was me, literally vibrating from head to toe. At this point I was also extremely tired, but could not sleep. My legs and arms felt extremely heavy, I could move them if I had to, but the thought of it was overwhelming. If I got up to go eat with my family I would sit for a few minutes, but the combination of sitting, talking, and eating would send me into an “episode” of extreme tingling, and difficulty breathing. I would need help getting back to bed. When standing I felt like I had just gotten off of a roller coaster… So after a week I called the pulmonary specialist again.
At this appointment he said the swelling in my bronchial tubes was completely better and that the asthma was getting better as well. As for the tingling and weakness, that was absolutely an inner ear problem and told me to see an ENT specialist. At that point, my friend who brought me to the doctor, who also happened to be an ER doctor at University of Penn said enough was enough and took me to HUP ER. They did admit me that day and ran several blood tests, and other test including a MRI and Xray, ect. They talked about doing a spinal tap and ECG but did not do it. Instead they said I did have neuropathy in my feet and shoulders. They also said my thyroid was out of whack (I have had hypothyroidism since high school but have maintained it with medication and exercise.) They released me and told me I would start to feel better and to go back to the neurologist in 2 weeks for a follow up. It was at this time the GBS was first brought up- but in whispers… I had no idea what it was at the time.
The week that followed the hospital, I continued to have tingling, my knees began to feel like they were detached from my calves. I also began to have numbness in my face and tongue. The left side of my mouth began to droop at times and I began to mumble. I also began to get cramping in my feet and thighs. At the follow up appointment, the doctor- someone who is very highly revered at Penn and on some board for GBS (someone who knows his own reputation…)- told me I had a mild form of GBS. He said the face tingling and mumbling were not part of the GBS and basically suggested it was psychological. He also mentioned that the labs done in the hospital showed elevations for the glucose test- possible diabetes, and elevations in the test for Lupus- although he suspected that was because of the GBS, due to it being an autoimmune disease. He told me to get new tests run for both and to begin taking Gabapentin (100 mg, 3 x’s per day.) He said “go home and in a week you are going to call me to tell me that I am a miracle worker and that you feel 100 percent better.”
Well a week came and went… I tried at this time to venture out, but ended up having extreme episodes brought on from sitting up and having a conversation, where my eye would begin to get dry, then my lid would close, the left side of my face would completely droop and my body would go limp. As if all the energy literally drained from my body. After an episode I would lay in bed and fall asleep immediately for 2-4 hours (surprising because I was dealing with insomnia throughout this whole thing) and then wake up feeling much better. I called my neuroligists secretary and left messages about what was going on… after 3 voice mails and 3 days later… I received a call back by the secretary. The secretary told me the doctor said to increase the Gabapentin to 300 mg/ 3 x’s per day and come in for a follow up next week so they could run a EMG test. She also told me the glucose test is now good but I still have an elevation in anti antibody dna… The whole conversation was pretty dismissive, I felt like they were bothered by my call. The following week I went in for the test, the doctor seemed to think it was amusing that I used a walker to get to his office… acted as if I was putting on a show. He said the EMG test was fine. That my sensory nerves were damaged but would get better, that there was no explanation for the severe drop in energy. That there was no explanation for feeling unbalanced and that the face and mouth symptoms… feeling like I had dental work were not symptoms of GBS. He assured me this would get better and to begin riding a stationary bike for 2 minuets at a time to increase mobility. He said to call him in a month to tell him- and yes he literally said this- what a amazing doctor he was.
So… at this point, it has been 4 months, I am still in bed most of the time, my symptoms seem to be getting better (some days I am able to be out with people for a few hours at a time) but this past week, after getting a chest cold and sinus infection, my symptoms seem to be back to where they were in March. I need to know I am not crazy… My neurologist makes me feel like I am putting on, and that it is a matter of will power. I am confused and depressed. My neck is killing me and my lower back aches. Most of the time my feet do not feel like they are connected to my body. I am not the type of person who over reacts. Before I got sick I was a mother of 2 young children. I own and operate a multi-million dollar business. I have a very healthy lifestyle… with exercise and very healthy diet. The week before I got sick I was running a 7 minute mile… I am not the type of person who can stay in bed… 3 days after having my second son I was back in the office. Please tell me someone else has these type of symptoms which elevate with activity… I need some advice. The worst part is I am missing out on so much with my family… any advice if very much appreciated.Currently my symptoms include and vary in strength depending on what I am doing:
-weakness in my legs and hand… difficulty holding a knife and fork (they feel extremely heavy)
-tingling in my feet, running up my legs, also in my fingers and hands, sometimes up my arms
-tingling in my face and mouth, drooping of the left side of my mouth
-extreme tiredness, but I can’t sleep
-cramps in my stomach
-back ache and neck ache… different then a pulled muscle or stiff neck, more of a throbbing
-extreme heaviness in my legs and feet… I have to will myself to lift them when walking up stairs -
May 29, 2012 at 12:49 am
I hate to say so little when you wrote so much…but the best advice I can give you is to find a new dr ASAP.
MANY people have been in your very same position with the dr not listening to them. They go on to find wonderful dr’s who give them answers & treatment.
A dr that I often refer people to is Dr. Dyck out of Mayo clinic in Minnesota. My daughter has never seen him but other people rave about him.
Kelly
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May 29, 2012 at 1:26 am
Kelly- thank you for responding… I know I wrote a lot, I am just so frustrated at this point and needed to know someone else was experiencing similar symptoms. I will start to research Dr. Dyck tomorrow to see if I can meet with him or if he can refer someone to me in my area. Thank you again, just nice to know I am not alone!
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May 29, 2012 at 1:51 am
I agree you ought to get another diagnosis. Here is a list of Centers of Excellence published by the foundation which operates this website:
http://www.gbs-cidp.org/home/get-support/centers-of-excellence/
Perhaps Johns Hopkins is reasonably close to you.
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May 29, 2012 at 2:05 am
SOO sorry to hear you are going through this… unfortunately I CAN RELATE! I was 30 when my illness started (actually a year ago today exactly was when I was admitted- emotional day today)!! I have the stomach pains (GI symptoms preceeded the neuro ones, which is common in GBS).. fast heart rate, numbness, tingling, weakness, droopy face/eyes, mouth.. I could barely smile, walk talk etc.. I must have seen 6 outpaient neurologists, my pcp, GI dr before truely getting help.. I had some dr’s tell me “well of course your tired, you have a 16 month old, a new born, work a full time demanding job” uggh.. weeks before I became sick I was running miles and breastfeeding taking care of my two small kids no problem.. I was THRILLED to be done with pregnancy and 4 years of miscarriages and high risk pregnancies and finally get my body back.. hahah joke was on me I guess!!!
Anyhow.. I have very simliar syptoms to you.. I couldn’t hold a pen, my silverware, barely hold my babies bottle, couldnt’ hold my kids at all.. Just the weight of holding them would push down on my hips and I could barely get one leg out from underneath me.. not to mention my arms were fatigued.. swallowing/speech ALL affected.. couldn’t even smile! I felt like my life was getting robbed from me – losing the ability to do everythign I love, but mostly be the mother I have always been and wanted to be!
I finally ended up in the ALS/neuromuscular clinic at the university here and got admitted into the hospital and got IVIG… after months of thinking at anypoint I was goign to drop dead.. I didn’t really feel tooo much better after the first round, but after the 2nd it hit me about 4 days later and felt like me again – got my dexterity and almost everything back.. though I”m a LOOOONG way from what my normal used to be.. (doubt ill be a runner ever again).. i’m just happy I can work and function as a mom mostly!I also have exacerbation of my symptoms anytime I get sick, overdo it etc.. right now have strep throat and am having a pretty good “relapse” .. I have been diagnosed with CIDP (though i have reflexes in my legs, almost nonexistent in my hands/arms)..they did a skin/punch/nerve biopsy for my diagnosis..
I also would say FIND A NEW DR!!! Any quack can get a medical degree..it is really hard to find a good dr.. It is awful to not only feel crazy with all of this goign on, but feeel bad, and have the dr’s think it’s in your head is so discouraging.. (I think younger females with kids get written off often).. it’s ashame and a disgrace to the medical community that some providers do this. If your not functioning to what you think you should be for your age and yourself seek someone who can help you get your life back, or in the least who will listen, and try things to help! It took MONTHS of testing and more testing and finally I said enough – i need to TRY something! Good luck! keep us updated! (btw- I also have the vibrating thing – especially after exertion.. and insomnia due to the “legs and arms asleep ” sensation.. I have no proprioception – i dont’ know where my limbs are many times, but yet they aren’t totally numb either- it’s wierd) Your not alone 🙂
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May 29, 2012 at 2:55 am
bny806… I can totally relate. I turned 29 the day I developed pneumonia and have 2 young boys at home. The worst part is the time robbed from them. My oldest will be 5 next month and he is very sweet, he helps get me things and asks if I need to hold his hand when we are walking so he can help ME… it should be the other way around. He said to me the other day, “Mommy- you’ve been sick for a very, very long time.” Just as a matter of fact. It crushed me. My 2 year old insists on helping me by holding on to my cane and without me asking, stands behind me on the stairs and tries to help lift my leg. Also very sweet, but crushing at the same time. By finally reaching out through this foundation I am finally feeling sane, and knowing that I need to push for answers.
I just relate so much to you… Thank you for sharing.
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May 29, 2012 at 3:07 am
I am so sorry.. gosh that breaks my heart just reading it!!! I know exactly how you feel.. I had an ALS scare with all of this (the first dr I saw said he thought I might have ALS..on a friday afternoon and said “we’ll do the emg on monday, try to relax this weekend” HAA!!!!! talk about a mental breakdown, with a 4 month old baby and another child under 2.. I was a wreck.. my emg was normal..well a little demylination.. but no ALS.. three EMG’s later.. and every dr saying i defintely don’t have ALS.. i am wracked with fear daily that I really do have it.. that the dr’s are missing something! I seriously have PTSD from that dr’s visit.. wish I could have amnesia of that event! I was told my first emg looked like a 90 year old.. but yet no treatment was offered up.. i was 30.. functioning like a 90 year old just isnt’ ok if there is a possible fix out there – we need to get to work trying!! KEep me updated (i am usually on the cidp section of this forum and only occasionally check over here).. good luck!!!
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May 29, 2012 at 3:08 am
oh, i meant to say ,, if they haven’t done a lumbar puncture yet.. i’d ask them for one.. there are a lot of things that can show up in them.. and a lot that don’t too! 🙂 but it’s worth a try!
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May 29, 2012 at 11:33 pm
My first word to you is to get another doctor. Insist on a muscle biopsy and lumbar puncture to start on your way to a diagnosis. My first doctor only prescribed gabapentin – her colleague was more pro-active and got the biopsy and lumbaar puncture. With my classical drop foot, pins and needles and trouble walking with “heavy legs” he came to a quick dx of CIDP. I am on 50g IVIV 5 running days every 2 months for a year to see if any improvement. Just finished my first seriw 2 weeks ago…so far no change. I will continue to monitor this site.
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May 30, 2012 at 12:39 am
I don’t agree that a patient should “insist” on a particular treatment, particularly something like a muscle biopsy or spinal test. Certainly a patient should be informed on the various procedures available, so as to be able to discuss the treatment plan with the doctor, but doctors make the diagnosis and order such tests as they need to make the diagnosis. Patients should have confidence in their doctors, and may seek another doctor if they don’t.
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May 30, 2012 at 1:43 am
I traveled out to Mayo and saw dr Dyck as Kelly mentioned above. It is a great way to get diagnosed, mayo will coordinate all of your testing to be done in a week. They are used to people coming from far away especially for this reason. The staff at the hospital are very helpful if you call. There are many reasonable places to stay near the hospital. If you are seriously looking at going out there and want more info let me know if I can help.
I definitely agree you should find another Dr. who will listen to you. My cidp is the slowly progressive type—and that was scary enougn for me (also a former runner) I dont know how you and Bny handled the way it came onto you both so fast and furious?? I would probably have planked my butt in a reputable nearby ER and refused to leave until they did SOMETHING!! -
June 5, 2012 at 2:13 pm
Here’s my update: I went back to the doctor at HUP yesterday and he said he no longer believes I have GBS because my symptoms have continued to progress. Due to my 2 past positive ANA test (Antibody antinuclear antibody) he wanted me to retest so we can explore possibility of Lupus or some other autoimmune disease… possibly see a rheumatologist. He is also retesting for lymes disease among other previous diseases which they tested for in March… After pushing him to tell me what we would do if the test did not come back with other indicators, I asked him what the next step is. I specifically asked, if this is GBS (which I have all the symptoms for) is there still potential for me to get worse… possible full paralysis. He said no, that GBS symptoms stop progressing after 4 weeks, so this would be something else. I asked him if he was referring to CIPD… he looked surprised that I knew what it was… he said yes, possibly CIPD. I asked what the next step would be… he said then we would redo the EMG test (which was previously normal) and then do a Lumbar Puncture (spinal tap). I then asked about treatments… he had already told me earlier in the appointment “I will NOT prescribe IVIG or Plasmapheresis”. He said in regards to treatments… we will talk about that when we get to that point. He then told me many of the people he treated, 1 who he has been treating for 12 years, do not get treated… that they feel the treatments are worse then their symptoms. So, my questions to you all are: Has anyone else had a positive ANA test but still diagnosed with GBS or CIPD? Has anyone else had normal reflexes and normal EMG tests but still diagonesed with GBS or CIPD? Has anyone else’s doctor been adamantly opposed to perform a spinal tap or prescribe IVIG treatments? All replies are appreciated (by the way… I am waiting for test results to come back and then plan on getting more opinions from other recommended doctors)
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June 5, 2012 at 2:47 pm
The normal protocol is to have a lumbar puncture, MRI with & without contrast of the brain & spine, and EMG – along with a myriad of blood tests.
People here have reported to have normal EMG’s & normal spinal taps.
My daughter had a low positive ANA but that was after nearly a year on IVIG – the thought is that the IVIG caused the false positive.
I really hope you get some answers soon. I know it’s not easy to know something is wrong but not know what it is.
Kelly
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June 5, 2012 at 4:21 pm
I don’t see why you wrote “Has anyone else’s doctor been adamantly opposed to perform a spinal tap or prescribe IVIG treatments?”, since you wrote just above that the lumbar puncture was being considered, should it become necessary. A premature CSF test could be inconclusive for CIDP, in which case it would be wasteful. Your neurologist is the best judge of when a CSF test is needed.
As for IvIg, it is a scarce resource as well as an expensive, therefore it is rationed. It is normally administered only when the diagnosis supports its use, so as not to waste it treating conditions for which it is known to be unhelpful. The first thing is to nail down the diagnosis.
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June 5, 2012 at 4:31 pm
GH: I asked the question about spinal tap or IVIG treatments because I have gone from being an extremely healthy, athletic 29 year old maintaining a very work intensive lifestyle and mothering 2 young boys to now going on 4 months of basic bed rest. The doctor I am seeing is using the wait and see approach but that is getting me no where. I raise the question of opposition to the test and treatment to find out why my doctor seems to be hesitant to move forward with either. At this point I must be an advocate for my own health for the good of myself and my children. At this point… I AM trying to nail down a diagnosis as I believe I clearly outlined above. Thank you, however, for the critique.
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June 5, 2012 at 4:46 pm
I am sorry to be disrepectful, but that doctor is crazy if he said he does not have a treatment schedule for people with cidp. I think that is what I read????? Now that it has been a while you might have results on the ncv/emg. If it was me, I would seek a new doc and have the ncvemg with the new doc. Should you decide to switch later, a new doc would want their own tests anyway. If you already know his stance on ivig or any treatment for that matter why even stay with him and waste copays and deductibles? Go to mayo right off the batt. The doctor should have also suggested a skin punch, some who have normal ncv/emg do get confirmation with the skin punch. A spinal is FOR SURE one of the first tests he should have done after the negative ncv/emg. The positive ANA is indicative of some sort of autoimmune, so he should be willing to do the spinal. I can’t remember, have you had a mri? Lessions would indicate ms. Lupus is obviously a posibility. I assume he did testing for RA? Honestly, your list of symptoms sound just like what happened to us. I am surprised you have not deteriorated father. The stomach cramping….are you constipated? How is urination, does it feel like you cannot empty? If these things are happening, it is affecting the autonomic system and progressing. If he is opposed to ivig. what about trying prednisone (after the spinal) just till you get a difinitive diagnosis. If you have a response, then you know there is an inflamation and some sort of treatment plan is necessary. The downfall to the prednisone, is the obvious affects it has on the body longterm. This doc seems like he would be one that would keep you on it if you respond instead of ivig. That would not be ideal. But at least it could hold you until you get a proper diagnosis.
We saw 3 docs before proper diagnosis. It was about 8 weeks or a littlemore from first real symptoms to paralysis. You have to do something or you could end up there too.
Regarding his statement that some of his patients would rather the symptoms than the side affects of ivig, that is just plain stupid. Everyone with this disease progresses differently, maybe these other patients only had a mild case with tingling. But I guarantee you if they were paralyzed like we were unable to urinate, defocate, they would rather the side affects of the ivig. If you get to the ivig point with this doc we will all help you with what each of us has done to alleviate the reactions. I will not lie, there is a chance you may get severe headaches with flu like symptoms. As well, you could be totally fine like many others.
FIRST THINGS FIRST, FIND A NEW DOC, GET FRESH NCV/EMG SPINAL ETC. OR JUST TELL THIS DOC YOU NEED HIM TO COME UP WITH A PLAN THAT INCLUDES A TREATMENT ONCE THE TESTS COME BACK.One more thing, I noticed you take 900mg of the gabepatin/neurotnin. You can go as high as 3600. Obviously you would have to change work/driving if you do that.
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June 5, 2012 at 4:47 pm
Unfortunately, neurologic conditions are often difficult to diagnose. If you feel your neurologist is not doing an adequate job of diagnosing your condition, you can seek another neurologist. I hope you find one in whom you have confidence.
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June 5, 2012 at 4:49 pm
I am sorry to be disrepectful, but that doctor is crazy if he said he does not have a treatment schedule for people with cidp. I think that is what I read????? Now that it has been a while you might have results on the ncv/emg. If it was me, I would seek a new doc and have the ncvemg with the new doc. Should you decide to switch later, a new doc would want their own tests anyway. If you already know his stance on ivig or any treatment for that matter why even stay with him and waste copays and deductibles? Go to mayo right off the batt. The doctor should have also suggested a skin punch, some who have normal ncv/emg do get confirmation with the skin punch. A spinal is FOR SURE one of the first tests he should have done after the negative ncv/emg. The positive ANA is indicative of some sort of autoimmune, so he should be willing to do the spinal. I can\’t remember, have you had a mri? Lessions would indicate ms. Lupus is obviously a posibility. I assume he did testing for RA? Honestly, your list of symptoms sound just like what happened to us. I am surprised you have not deteriorated father. The stomach cramping….are you constipated? How is urination, does it feel like you cannot empty? If these things are happening, it is affecting the autonomic system and progressing. If he is opposed to ivig. what about trying prednisone (after the spinal) just till you get a difinitive diagnosis. If you have a response, then you know there is an inflamation and some sort of treatment plan is necessary. The downfall to the prednisone, is the obvious affects it has on the body longterm. This doc seems like he would be one that would keep you on it if you respond instead of ivig. That would not be ideal. But at least it could hold you until you get a proper diagnosis.
We saw 3 docs before proper diagnosis. It was about 8 weeks or a littlemore from first real symptoms to paralysis. You have to do something or you could end up there too.
Regarding his statement that some of his patients would rather the symptoms than the side affects of ivig, that is just plain stupid. Everyone with this disease progresses differently, maybe these other patients only had a mild case with tingling. But I guarantee you if they were paralyzed like we were unable to urinate, defocate, they would rather the side affects of the ivig. If you get to the ivig point with this doc we will all help you with what each of us has done to alleviate the reactions. I will not lie, there is a chance you may get severe headaches with flu like symptoms. As well, you could be totally fine like many others.
FIRST THINGS FIRST, FIND A NEW DOC, GET FRESH NCV/EMG SPINAL ETC. OR JUST TELL THIS DOC YOU NEED HIM TO COME UP WITH A PLAN THAT INCLUDES A TREATMENT ONCE THE TESTS COME BACK.One more thing, I noticed you take 900mg of the gabepatin/neurotnin. You can go as high as 3600. Obviously you would have to change work/driving if you do that.
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June 5, 2012 at 5:18 pm
Dawn Kevies Mom-
Thank you for your response. Yes I have had a MRI, which was negative. I do know at this point I must look to a new neurologists, as I do not have confidence in my current doctor- who happens to be on the board of this foundation. I am, at this point having the urination issue… feeling like I cannot empty my bladder and varying degrees of constipation. LOVELY BONUS!!! My dosage of Gabepatin has been been increased.
I am currently researching Mayo, John Hopkins, and Hersey Center, as well as other neurologist in my area who I know have treated GBS.
Thank you again… I will update
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June 5, 2012 at 6:13 pm
About the constipation, we started using colace and dulcolax to stay regular. He would not do miralax, nine y/o at the time. The pill was much easier. I will pray that you find someone soon. Check a member name Julie. I think she had good results at Hopkins, maybe through the archives you can find the name. She too was a difficult case. May on the site haveseen Dr. Dyck. Actually, I think it is his son now, not sure. Getting an answer for a confirmed dx, whatever the ailment will be 75% of the battle. From there it is all uphill. Have patience. Good luck, we will say a prayer that you find the right doc soon.
There was one girl on here who had a urination issue, she would mandatorily go to the bathroom every two hours regardless of urge just to be sure. I will try to remember her name and maybe you could search her posts for info. I believe she too had difficulty getting a dx.
Maybe someone will respond with the name…..She was older, lived with her parents, had issues with afo’s. I can’t remember her name now, maybe it will come to me. -
June 5, 2012 at 8:04 pm
love2run- good luck with everything.. gosh all the testing and waiting is SO hard.. this is all so hard, but just waiting for someone to finally actually help is tough! As far as the ANA goes I have always had positive ones, the lowest a 1:80, the worse 1:860 or 1:640 (can’t remember).. My sojgrens markers were elevated one time, negative another and I think everything else was negative.. the lupus “panel” was all negative twice.. My LP was normal one time (upper limit of normal protein the first time). Second time I had meningitis (aseptic) from the IVIG and the protein was elevated – they weren’t sure if the meningitis threw this off or not, as the protein was over 100 and I was most symptomatic at that time too (when I was admitted into the hospital). My GI issues were basically malabsorption/loose stools – like 30 a day ugh.. I felt like I was starving to death i was SOOOOOO Hungry like at the beginning of pregnancy ALL THE TIME.. I ate NONSTOP, even in the middle of the night – huge meals (strange huh?) I am now eating gluten free for over a year due to all of this- the IVIG fixed that issue thank God! Urine issues – I had retention and incontinence.. no fun!
I think I saw 5 or 6 outpatient Neuros before getting the help- skin biopsy apparently sealed the deal.. I did wait too long though and coudln’t breath well for over a week and was choking on food and liquids from swallowing issues when I was admitted into the hospital. I can’t tell you how many times I was asked if I was “Stressed out” being a full time working mom of two.. i just wanted to scream- You people are stressing me out!! Good luck!!! We’ll be thinking about ya!!! -
June 14, 2012 at 3:03 am
I went to Mayo and found it to be a worthwhile trip. I was going for a second opinion—i would not hesitate at all to go there for a diagnosis. I saw Dr Dyck (James) there’s 2, father and son.
Bny—-YeSSSS on the whole stress comment!! I have been told how stress is so bad for our immune systems, etc…..but the biggest stressor in my life is this cidp. If i wasn’t dealing with this, i really can’t think of anything else i would be stressed about.
mothering, work , exercise are all things i enjoy, don’t know why dr’s would think these things are stressful……obviously because they are not living life with cidp. Lori -
June 14, 2012 at 9:20 pm
Lori- I couldn’t agree more!!! How easy would it all be, if this whole health part of the stress was eliminated, if i could feel good and my body be back to “normal”, I feel like I could do SOOO much!!! but, hey.. as long as I have something semi treatable then I won’t complain, but, as I was in tears last night after my infusion, doesnt’ mean that this whole thing is easy either!
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June 14, 2012 at 10:23 pm
no it’s not easy. i was having a hard time with “treatable” and really want “cureable” something where i won’t have to plan on it being lifelong. That was one of the things i took into consideration when i made the decision to try rituxin. It’s 6 infusions in 18 months if it works like my Dr hopes. I agree….i can’t help but always think how wonderful my life would be if i could just get rid of this and get more strength back in my legs. At this point I wont even care if Im unable to run or ski again—I would just like walking to be easy again, have a normal gait, and be able to stand in one spot without wobbling.
Did something go wrong at your infusion, or were you just having “a moment” I try to stay strong most of the time—but sometimes those ” why me –crying moments” take over. -
August 18, 2012 at 2:52 am
If you live near a teaching hospital I would recommend you start there. Most doc’s are not trained in rare illnesses our’s: CIDP and all the variants etc., will leave them scratching there heads. Teaching hospitals have doc’s who not only scratch their heads, but they dig in to find the causes, treatment options etc. And, your illness will be approached by a team of very smart people.
If y0u’re not near a teaching hospital then, I recommend a neurologist with not only an MD but also a PHD under their belt. Look for the smartest docs for all your care. After, diagnosis we with rare diseases usually end up with between 8-10 docs treating all the symptoms of our “weird” diseases.
Wishing you the very best,
Dianna H.
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August 20, 2012 at 5:22 pm
We are not crazy and you are not alone! Since its been so many years since my onset, and since I didn’t get IVIG or anything much at the time, I currently try to keep my PCP doc updated on current meds that help.
Peace & Love,
Chrissy
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