Conflicting Diagnosis

pursue the matter further! You did have an elevation, however slight it was. Perhaps ncv/emg numbers are not that reduced because you are in beginning stages or a mild case. All the more reason to pursue and push for ivig so you can quickly get things under control and prevent further damage. Good Luck.
Dawn Kevies mom

Eoin,
I agree with Dawn. I started with very mild numbness in my toes in 2001. At first I ignored it more or less but when it got worse over the years I saw one neurologist after the other receiving the same diagnosis: neuropathy, cause unknown. It wasn’t until 2005 until I found a neurologist specializing in neuropathy. I’m glad I did not give up. I have a CIDP variant which does not respond well to IVIG. I’m finally getting more appropriate treatment waiting for improvements. I am sure if I would have received proper treatment years ago, I wouldn’t be in a wheelchair today.

It is my understanding that protein levels in the spinal tap do not necessarily have to be elevated in CIDP. I can’t remember my level but it was not extremely high even though my symptoms were pretty advanced at the time the test was done.

Where in Pittsburgh do you live? I lived there for 12 years, went to Pitt and Duquesne.

And I agree as well since my protein was elevated but not super high. And I respond very well to IVIG and Solumedrol. Had a dose today and can type like a normal person:) Keep searching and if you need to go to a third or fourth doc, do it. I lucked out and number two doc is great!

There have been [B]many[/B] on the forum who have had ‘low’ elevated protein in their results, that doesnt mean you dont have CIDP! I honestly cant believe this doctor says that ‘he likes to see’ above 65. How familiar is this neuro with CIDP? There are two liaisons who are in Pittsburgh, do you have their contact details – they may be able to help you out on a doctor who is familiar with CIDP.

Oh man, stupid dr’s abound these days! (Don’t mind me, I’m hating dr’s right now)

Even a perfectly normal spinal fluid level still can be CIDP. A perfectly normal EMG can still mean CIDP. Some people have CIDP but EVERY SINGLE test shows results which are in the normal range. But they still have numbness, pain & fatigue. Some of those people are given IVIG & once they get better then they will get their official CIDP diagnosis.

You do know that an EMG isn’t an exact science, right? Two different dr’s could do EMG’s on you one right after the other & give you different results. You need a dr that is REALLY good at performing & reading EMG’s.

I would tend to go with the first dr’s diagnosis. If you want to get another opinion then you can try. But you ARE having symptoms which are similar to those with CIDP. If it is really CIDP then you need to start a treatment program ASAP.

Were any treatments offered to you by the first dr?

Good luck,
Kelly

I have CIDP and my spinal tap was normal and I had a nerve biopsy and it was normal and I still have pain from it 3 years later. It’s the nerve testing that showed her I had CIDP.

Sue

Eoin:

I have a chronic progressive CIDP variant called MADSAN or Lewis-Sumner Syndrome. It is marked by asymetric weakness plus cranial nerve damage causing severe double vision. It is an atypical presentation of CIDP in some regards. I have had two spinal taps with the highest protein count being 53. I am quite disabled, and suffered one very severe 8-month long exacerbation that basically left me house-bound for several months. My NCV/EMG does demonstrate severe demyelination and axonal damge, however, my protein count is lower than yours. So, the neurologist is just plain wrong regarding a protein count of 65. I do respond to IVIG in that it slows progression. If I miss an infusion, my progression increases like clockwork.

My case developed slowly and insiduously – I tried to ignore it, then, it grabbed me big time. I would pursue your case vigorously now, while symptoms are still mild.

I’d suggest seeing a neuro muscular specialist at a teaching university.

My spinal test is very normal, my blood test too, but every four weeks I go weakness, fatigue, and almost paralyzed and of course I was diagnosed with CIDP by two neurologist and I need my IVG treatment like the oxygen.

I agree with Kelly you should have a treatment ASAP, and I would trust your first neurologist, it seems he knows better what’s going on.

Best wishes.

Lourdes

Eion
That is similar to how I started out. Numbness in feet and my family doctor just shrugged as if it was normal. So I lost about 6 months before seeing another doctor and then going through 9 months of tests. Where I am going with all this is that for all of that period you are losing time during which the demyelination may continue and reach the point where everyday things start to go wrong (foot drop, improper gait, tripping and loss of balance, loss of sensation on pedal when driving, etc etc). Whether it is CIDP or a variant of CIDP as Norb mentioned, or something else (Charcot Marie Tooth, B12 deficiency, etc) you should not lose time because the nerves don’t recover overnight…the repair process can be very slow. Keep after your doctors or find new ones so that you can isolate the cause and get going with the remedy ASAP.
Andrew