Pre-dx limbo- WWYD?
October 26, 2017 at 11:58 am
So, diagnosed with GBS last April, treated with IVIg, a return of symptoms and slow, but spontaneous recovery in June-July, then 2 months of perfect health in August and September. Now fatigue and weakness are back for the past 3 weeks, now so severe that I can’t work.
My neurologist has referred me to Mayo, but now she’s basically washed her hands of me. I asked her what I should do while I’m waiting, and she said to go back to my PCP to rule out anything else and to go to the ER if it gets really bad.
I can’t walk more than a short distance, can’t lift more than about 3 lbs, and don’t feel safe driving. But I know from my experiences in April and June that it’s unlikely I will show the typical markers before I’m really, really severe (my reflexes didn’t diminish until I couldn’t walk or pee, and my csf and EMG were normal at this level of functioning).
I thought about trying to get a second opinion, but all the other neurologists in this city use the hospital that’s already treating me (or not treating me, at this point) as a referral center, were trained there, etc. I’m not sure where it would get me.
Do I have any options at this point, other than taking medical leave and sitting around until I get an appointment at Mayo? I’m actually hoping that it will get really bad really fast so I can go to the ER and actually be treated.
October 26, 2017 at 2:15 pm
I would change neurologists. Your PCP should refer you to another if he or she determines that your problem is neurological. A neurologist who is interested in your problem (assuming it is neurological) is the thing of first importance.
October 28, 2017 at 11:48 pm
Where do you live?
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.
You must be logged in to reply to this topic.