November 10, 2017 at 9:39 pm
@Jcheart Thank you for responding. It is so frustrating. I was able to see a neuromuscular specialist again. He did more labs for Myasthenia Gravis and another EMG, all normal. It got to the point where I could barely walk so I am now on leave from work. My strength has improved with rest, but the fatigue is unrelenting, and whenever I raise my activity level the weakness gets worse. Mayo just scheduled me for the end of January, so hopefully I will get some answers there (although if I’m lucky enough that insurance will cover it, I will have to crowdsource the travel expenses).
I’m so sorry about your experience. Best of luck with your EMG! I hope they figure out what’s going on with you.October 29, 2017 at 12:56 pm
I live in Portland, OR. I agree that I need to change neurologists, but I’m already at the best hospital in the city. My PCP confirmed that other neurologists she could refer me to would probably kick me back to OHSU (where I’m at now). On Thursday I reached out to an old friend at UCLA, who emailed my neurologist. She immediately started backpedaling and pretending she wasn’t blowing me off. I now have an appointment with someone on the neuromuscular team, which is very good. 🙂 I’m feeling more hopeful now.October 13, 2017 at 11:02 pm
Thank you both for the responses, and thanks for sharing that case study. My doctor is a neuroimmunologist. I also saw a neuromuscular specialist in June who did my repeat EMG and questioned my dx. They are at Oregon Health Science University, which is not a center of excellence. There aren’t any centers of excellence in the pacific nw. My oldest friend is actually a neurologist at UCLA (she specializes in neurobehavioral genetics) and she recommended that I try a hospital that is NOT a research institution, as they might be more likely to treat me without hard data to justify the treatment. She also thinks I should go to Mayo if I can’t get a dx here, but there’s no way I can afford to travel that far.
I sent a message to my neurologist with a rundown of what I’m experiencing and put the ball in her court. We will see what happens. I am pretty confident IVIG would help me, based on my rapid response to treatment in the hospital. But after what I went through in June, I doubt they will give it to me without a clear dx. 🙁 In the mean time, I’m limping along. If I stay like I am now, I can probably cope for at least awhile. If I get worse, I’m going to have to file for FMLA again.June 19, 2017 at 7:41 pm
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.June 10, 2017 at 9:05 pm
Thank you all for your responses. I’m feeling worse every day. I’m going to call the neurology clinic on Monday. I have a neurologist (the one who treated me for my 6-day hospital stay) but my follow-up appointment is not until July. They were booked that far out when I scheduled in April. I’m not sure how I’m going to get in sooner, or if they will refer me elsewhere.
My hospital EMG showed “acute polyradiculoneuropathy with subtle demyelination” so my GBS dx was pretty certain. I’m nervous about what this means going forward, if I will be able to return to work, etc. I think you all are right though, in that I need to go in ASAP.