Discussions By Condition: I cannot get a diagnosis.

CIDP? GBS? MMN? Doctor has no clue...

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: kevinjo
  • November 8, 2006
  • 04:41 AM

Two years ago I had a very bad stomach bug. About a few days to a week after I started to get numbness on my right arm, then my left, right leg and then left leg. I began to have extreme difficulty in walking and fatigue. The pain was bareable although troublesome. Doctors had no idea and thought of GBS/CIDP. I was given IVIG and recovered to some degree. After a few months I got worse again and had a subsequent 5 doses of it. My original doctor was not sure what to do after another few months of being fairly well and getting worse again. He cut ties with me and sent me on my way.

I went to many doctors and most didn't believe I even had GBS let alone CIDP which my original doctor suspected. They offered no other diagnosis ( worth mentioning that is ). Their reason was a fair EMG test, Lumbar test and many blood test coming back normal or very close to normal. I have noticed on all 3 EMG tests that 1 nerve test in my legs was abnormal but doesn't explain the rest of my body being normal.

Now I am receiving IVIG regularly and maintaing a fair lifestyle of 2 IVIG treatments every month. If I do not receive them then I have very very severe pain, muscle cramps, severe fatigue and basicly a parapoligic. Life would be unbareable without it and wonder if the end would be near if things went south and I was unable to receive IVIG.

My problem is insurance does not want to keep paying for it without a clear cut diagnosis. My present dr is with me but he wants to be honest with my insurance company but has no idea what to do.

Other treatments was offered ( steroids ) but do not wish to use them due to their severe side effects and lack of helping in many cases.
I hope someone here has an idea and would be willing to discuss it. Thanks and good luck:)

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3 Replies:

  • My husband was just diagnosed with this disease. After 4 years and many many Drs we fianlly have an answer.5 years ago my husband lifted weights, enjoyed a very active healthy llifestyle. My husband also is a diabetic insulin dependent. For the last 4 years he was told all symptoms were related to his diabetics. After losing 40 pounds, unable to work out, extreme fatigue and numbness in both feet, no one could tell us what was going on. They always stated it was due to diabeties. Within the last year the numbness has turned to burning in his feet, legs and groin area. Even to touch these areas were painful, his legs cannot cross or touch each other and for someone to touch him it is unbearable. He has lost all the hairs on his feet and legs. He cannot climb stairs, curbs or find solid footage when he walks. Within the last few months he cannot get up from a chair with assistance or pushing himself up, he recently started using a cane which is helping him secure his footage and assisting him in getting up from a seated position. After many nerve test, MRI, muscle bioposis and a nerve bioposis the FINALLY diagnosed him with CIDP. With everything I read it does not talk about the pain, the pain this man is in brings him to tears, he cannot sleep and the only relief is hot baths, as soon as he leaves the hot water his legs and feet start the pain all over. At this point I still not sure they have the correct diagnosis. Can anyone help?
    Anonymous 42789 Replies Flag this Response
  • PAIN is a real real CIDP symptom. I am border line CIDP and the pain is sometimes unbareable. Has anyone suggested IVIG treatment? I have received it many times and does me wonders. Some other people have luck with prednisone. That is pretty hit and miss and mostly miss from what I have read. Is a cheaper way to go if it works for ya. The groin pain is unusual. CIDP usually effects the limbs but then again I also have chest pain from it which is unusual. Keep looking for a doctor who knows how to treat it. I have seen..let's see...7 doctors now. A good doctor will discuss options and provide you with the treatment that you feel comfortable with. For me, IVIG is awesome except for the dreaded 2 day headache. After 3 days from my 2nd treatment, I am able to start doing things I was unable to do before. After about a week, I am 90% back to where I was before my CIDP started. IVIG is a temporary solution. Mine lasts from 3 weeks to 3 months, mostly 3 weeks. I am unsure why I am able to go 3 months from time to time. Once the IVIG wears off..geez.. talk about a 200 pound weight on someones shoulders. Keep reading about CIDP and you will find alot of answers or other people effected by this. Good luck and if I can be of further assistance..let me know. kevinjo@cox.net
    kevinjo 1 Replies Flag this Response
  • It seems to me your doctor has many clues, but they are not conclusive. Neuropathies are difficult to diagnose, and this should be done by a specialist. Is your doctor a neurologist? If not, you should have been referred to one.CIDP should cause elevated protein in the spinal fluid. If this is normal, that would work against a diagnosis of CIDP. Perhaps it depends on when it was done. Did you have it before IvIg treatments? If your neurologist can't figure it out, try another one. CIDP is treatable, but you need an accurate diagnosis.Gary with CIDP
    Anonymous 42789 Replies Flag this Response
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