Reply To: Non-linear recovery (tell me I don't have CIDP)

I am so frustrated right now. After calling nonstop, I was able to get in to see my neurologist last Wednesday, and she scheduled an urgent repeat EMG for last Friday. She also prescribed Gabapentin for my pain. I took the Gabapentin once, but woke up the next morning with my heart racing an a heart rate of 104 lying in bed. I decided to hold off taking it again until I talked to the doctor again, especially as the pain is manageable.

I went in for the EMG, but the doctor (different one) did not find anything of concern. I asked him why this might be, when I’m so much weaker now after getting better. He told me that the abnormalities in my original EMG were very subtle, so maybe I’m not far enough into the disease process this time for it to show up. This makes sense, as the original EMG was done at a time when I could barely walk or lift my arms, and I’m not as weak now. He said he’d talk to my doctor and she would call me over the weekend.

I also spoke to my oldest friend, who is a neurologist in another city, on Wednesday and Friday. She said she would give me IVIg right away and not wait for the results of the EMG. She also said that if the demyelination process is mostly affecting my small nerve bundles, and not the large ones, right now, that an EMG would be normal, and that EMG results lag far behind symptoms.

So I get a message on MyChart from my doctor on Sunday night saying “good news! EMG is normal! Let me know how Gabapentin is working.” I responded that there was no improvement in symptoms and I would like to discuss starting IVIg again, despite the EMG results. I also left a phone message with the medical assistant letting her know my issue with the gabapentin. I got another message from my dr. this afternoon saying there was no indication for IVIg because my nerves are normal and that what I’m experiencing is residual pain from the original illness, which the gabapentin should help with. Grrr!

I left her a long, adamant reply telling her that the pain was the least of my worries and it’s the disabling fatigue and weakness I’m concerned about. If I don’t go back to work in July I may lose my job. I’m out of FMLA time. I gave her several clear examples of how I was fully functional with normal strength and only mild fatigue 3 weeks ago and can’t even take care of myself now, let alone care for my kids or work.

I get that she needs clinical indicators to justify treatment, but it seems like she’s completely disregarding my experience. Something serious is going on here and I need more than a pill to lessen my least serious symptom. I’m afraid I will have to lose my job and my ability to walk before anyone will do anything.