Hi, my husband was diagnosed with CIDP last November. He currently receives Chemotheropy monthly and IVIG two days a month. He also is taking predisone and Cellcep. He has not seen any improvement. He is in a wheelchair as he can’t walk.
Has anyone been misdiagnosed with CIDP? Could it be something else?
I have been to four neurologists. I presented with right drop foot, fatigue, weakness, PAIN, etc. Every test imaginable was ran on me. Everything came back 100% normal except the EMG/Nerve Conduction. It showed I had a major problem with my peripheral nerves. My regular neuro sent me to a specialist. I saw him several times. He said I was faking this and it was all in my head. So I went to a neuro at the Univ. of Iowa. Without having my test results, she said I had MS because I present with all the symptoms of MS. I have recently seen a neuromuscular doctor at the Univ. of Iowa. He had an EMG/ NC done on me. He said I did not have CIDP. He said if he didn't already know better, he would also say MS. So now I am scheduled to a neuropsychologist to see if this is all in my head or not.
Hi Jordan,
Coincidentally I was just reading a prior post from you under "additional medications" where you talked about symptoms you had that were so similar to mine--the sciatica, leg cramping, and the abdominal binder feeling--and how the medications you were taking at that time really did not totally alleviate the pain. I find it very interesting that now you have been potentially diagnosed with MS--since that abdominal binder feeling is very common in MS patients. I've seen people on this discussion board talk about it also, and how the medications typically used for CIDP do not really help relieve their discomfort with these symptoms. I wonder how many people are misdiagnosed with CIDP since I see so many people who do not seem to be helped by the "first line" treatment of IVIG. I'm now on IVIG every 3 weeks x 2 doses and also 50mg of oral prednisone daily. After just a week of adding the daily prednisone I was awakened during the night with a crippling, severe back spasm and have been taking flexeril and icing/heating my lower back all of this week. I've also had an increase in calf cramping and the abdominal binder feeling during this week on the extra prednisone. I'm thinking I should call my neurologist and tell her I'm stopping the prednisone and just staying on the IVIG which I'm due to have next Monday and Tuesday. I'm really questioning my diagnosis too at this point. I had an abnormal genetic test finding which may or may not be related to Charcot-Marie-Tooth which is an inherited peripheral neuropathy which has no treatment. My neurologist has no idea if the finding is correct and has put it out to a "test bank data base" to see if any genetic lab is able to confirm it as a "pathological" finding. Of course this does little to increase my confidence in my physician! This is such a frustrating condition! So glad at least you may now be on the right road to a correct diagnosis and treatment.
CMT and CIDP look very much alike. If there's a chance you may have it, go the CMT website and pull up the list of medications that can exacerbate CMT specific neuropathy.
My relapses weren't completely controlled by ivig and prednisone. A hematologists gave me a NutreEval FMV test by Genova Diagnostics. Any doctor can order it and my insurance didn't cover it. It evaluated my micronutrients, amino acids, fatty acids, mitochondria, oxidative stress markers, elemental including toxic. I had issues across the board. Since addressing them and changing my diet, I have been able to minimize ivig. I have been off high dose prednisone for 2 years and went from every other week full dose ivig to once a month 60% dose. I still get relapses but I recover much more quickly. My pain has profoundly improved. The quality of my life has improved 100 fold. And, I am loosing inches and building muscles as my metabolism is finally kicking in. I wish I knew about this years ago and highly recommend taking the NutrEval test.
I thought the cramping was from relapses only to find out it was from low magnesium. You may need magnesium citrate and/ or potassium for cramping. Bananas and honeydew are great for potassium. Make sure your hydrated. Check to see about interactions with medications and supplements on medline or with your doctor before taking because some can be tricky.
http://www.nlm.nih.gov/medlineplus/vitamins.html
http://www.copd-international.com/library/corticosteroids.htm
Dear Mabes,
Thanks so much. This is a wealth of helpful information. This disorder is so complex and it stands to reason there may be many underlying issues contributing to our symptoms. I have never heard of this test before. I'll mention it to my neurologist at my next visit, and if she doesn't want to write an order for it, I'll consult with my PMD who is a DO and is more open to alternative types of treatments.
My neuro doc has recently added 50mg of oral prednisone to my every 3 week dose of IVIG and after only 1 week I've had an increase in horrible back spasms and the "stocking/glove" feeling in both my lower legs. She has me tapering down off the oral prednisone already since it seems to be making me feel worse--I was exercising up until I started taking it only a week ago, now my legs feel so heavy I feel like I can't move! Plus the back is still sore from the intense spasms I had a few nights ago during sleep. It's very discouraging to feel "good" then to feel so bad again so quickly. I'm due again for back-to-back two days of IVIG this coming Mon and Tues so hopefully that'll pick me back up again.
Thanks so much for the information!
mabes said:
CMT and CIDP look very much alike. If there's a chance you may have it, go the CMT website and pull up the list of medications that can exacerbate CMT specific neuropathy.
My relapses weren't completely controlled by ivig and prednisone. A hematologists gave me a NutreEval FMV test by Genova Diagnostics. Any doctor can order it and my insurance didn't cover it. It evaluated my micronutrients, amino acids, fatty acids, mitochondria, oxidative stress markers, elemental including toxic. I had issues across the board. Since addressing them and changing my diet, I have been able to minimize ivig. I have been off high dose prednisone for 2 years and went from every other week full dose ivig to once a month 60% dose. I still get relapses but I recover much more quickly. My pain has profoundly improved. The quality of my life has improved 100 fold. And, I am loosing inches and building muscles as my metabolism is finally kicking in. I wish I knew about this years ago and highly recommend taking the NutrEval test.
I thought the cramping was from relapses only to find out it was from low magnesium. You may need magnesium citrate and/ or potassium for cramping. Bananas and honeydew are great for potassium. Make sure your hydrated. Check to see about interactions with medications and supplements on medline or with your doctor before taking because some can be tricky.
http://www.nlm.nih.gov/medlineplus/vitamins.html
http://www.copd-international.com/library/corticosteroids.htm