Reply To: Undiagnosed Adult GBS, mild case?
Sorry you are going through this. You obviously have done a lot of research and have clear descriptions and records of your symptoms. I have CIDP, not GBS, but my understanding of both is that if you have them that early diagnosis and treatment is important. Waiting months and years for a CIDP diagnosis isn’t uncommon, but it seems that GBS is more acute and diagnosed more quickly. (I’m no expert though). Also, I have heard CIDP patients say they believe and infection kicked off their symptoms.
It doesn’t seem you’ve seen a neurologist, even the in the hospital, so it is good that you are trying to see one. Can your PCP get you in sooner? It seems 6 weeks is too long given your symptoms. If your symptoms get worse, you could try the ER again and try to see the neuro on call at the hospital. Have you had an EMG/NCS and/or a lumbar puncture (spinal tap)? Perhaps your primary could order those so you at least have them when you see the neuro. Although the EMG/NCS is somewhat of an art and some neuros want their own.
Where are you located? Is it a big city with a teaching hospital? Perhaps try a bigger teaching hospital that will have neuros serving the ER? Also, this site has a list of “Centers of Excellence” with physicians that have proven an expertise in GBS/CIDP. I haven’t gone to one, but was planning to if I didn’t get a diagnosis.
CIDP affects the peripheral nervous system, which includes autonomic. Sometimes when my symptoms flare, I find myself unable to eat more than an ounce or two at a time. I believe this is called gastroparesis when the stomach isn’t emptying properly. I find buying smoothies with protein and slowly drinking them throughout the day gets more of the calories and nutrition I need and goes in easier than solid food.
While you’re waiting, try to do strengthening and balance exercises if you can. This will help you feel better, avoid atrophy and monitor your symptoms (wow, I could do that yesterday, not today, and vice versa).
Best of luck to you. And hopefully more members respond to you — there are several very knowledgeable members of this group who give great advice. If you want/need more, there are a couple of private facebook groups with thousands of members that are more active than this forum.