Well, not sure this is good news or not. I have all the symptoms of CIDP, and actually know the day when I probably contracted GBS, but it was mild and went under the radar. My Spinal Tap came back perfectly clean. No abnormal levels of anything. I know that sometimes you can still have MS or CIDP with a clean spinal tap, but it just would have been nice to have to seal the DX. ::Heavy Sigh:: Neuro wants to do the wait and see approach with no therapy, I want another opinion.
Hi christine, get another opinion. My first neuro thought it was such a big deal when my CSF came back normal. Lots of head scratching and sighing. When i went to 2nd neuro, she looked @ EMG results & said I was textbook CIDP. I said what about CSF…she made a face and waved it off. Jo
Thanks Jo, I already looked up her number. I feel sorta weird getting a second opinion with another neuro in the same practice, but it's my friggen body LOL :-)
Christine, I did that with my gastro. When I told my dr she said they are always happy and wld rather patients go inside the practice for a second opinion than outside. I would try not to volunteer the info that your docctor is with the practice. Did you have an EMG there? Did your doctor do the test or did Gursoy do it? Jo
Well, another way to diagnose CIDP is to see what treatments work. As I understand it, Prednisone works great on CIDP for some people (but it didn't do a thing for me), but is not effective on Guillian-Barre. Maybe your doctor would be willing to try you on that for a while to see if it works. It is cheap and easy, although it does have some unpleasant side effects. If it does help, that might be at least suggestive of CIDP.
Another option would be to try IVIG. That is much more expensive, requires several hours at a time for the infusion treatment, for several days. However, I don't think many other things respond to IVIG. So, if it helps you, it might be strongly suggestive that what you have is CIDP.
Your doctor may balk, but it might be worth trying.
Second opinions are so important and keep Drs on their toes. I am going to Duke next week for a second opinion abouit my misdxed MS. I definately have CIDP but on the outside chance that I have both, I want to be sure. And by the way, my protein in my lumbar was 123.
What is the cut off, 50 something? I can't remember. Good Luck!
Uncle Bill, I wanted to try the treatment, but he won't approve unless I get a positive spinal tap result. I am going to get a second opinion.
I was afraid of that. This whole area is so complex, and so poorly understood, that diagnosis is very hard. My neurologist told me that seeing what works is sometimes how they can narrow things down. But he is very experienced with this, and has seen many cases, so I think he is a little more open minded than some.
If they haven't tried Prednisone yet, ask if he would be willing to try that. Apparently it works almost like a miracle for some people, although it had little or no effect on me. But it is very inexpensive, so he might be willing to give it a try.
Hi Christine, I am guessing your dr is Kaufman, although Patricia Coyle is acting chair of neurology, he is chief of something too. Seems to me that these neurologists need to get together on what constitutes a dx of CIDP. Dr. Gursoy, who as you know is in the same practice, says that a high protein in Csf in not neccessary. We spoke about at length when I saw her on thursday. From my research, the high protein in the csf is a by-product of the myelin shedding. According to dr. gursoy, since lumbar punctures would not be done weekly, as easily as taking a blood test, there is no way to know if the protein is always high in CIDP patients, therefore, tho it can be used to cement a dx of CIDP, it should not be used to exclude a dx. it has to be true that you can have CIDP without high protein in your CSF because mine was normal and Gursoy said I show classic CIDP on the EMGs of both extremities. Doour EMG tests showmthat you have myelin damage? If they do in @ least 3 nerves and in upper and lower, then I think that is all you need. I think you should see her. You certainly want the correct dx. Have you hadmbrain MRI and cervical MRI to try to rule out MS? Do you have that ANNOYING BAR IN FRONT OF YOUR FACE? ow do Iget rid of that stupid thing? Jo