The Foundation’s regional conference is in Chicago (Schaumburg) in two weeks. (9/23). It’s 9-5 and $35. The presenting neuros aren’t local, but you might be able to meet local patients attending the conference. Some will be travelling in like me, but I would think a bulk of the attendees would be local.

And I agree with ARielsstars that the FB pages are great. I belong to 3 closed groups that you have to be accepted into. There are also some public groups. For the close groups, they actually check to make sure you have a legit profile and may ask about your diagnosis. They try to keep spammers out of there.

Sorry to hear what you are going through and good look getting some answers and hopefully treatment. I can’t answer your question, but I was wondering if you are seeing a neurologist that is recognized by this Foundation as a “Center of Excellence”. Also, is it possible that you have CIDP, not GBS? Have you had a lumbar puncture (spinal tap), brain/spine MRI, nerve biopsy and a blood lab panel that would rule out many other diseases? Do you have all of your deep tendon reflexes?

Interesting! Saving to read more in depth later (when I’m not so tired, LOL).

I often have breathing difficulties. Not so much shortness of breath as a repeated yawn reflex where I yawn, can’t get a satisfying breath and yawn repeatedly. It’s like my brain isn’t getting the message that I have enough air. And/or my muscles aren’t expanding my ribcage enough (like the “MS hug”).

I too have low blood pressure that tanks during IVIG. Anytime I get below 90 systolic, my nurse has me stand up and she also stops the IVIG and pushes some saline for a while. My PCP also has me do “counter pressure maneuvers”. Basically tense up muscles in legs, feet, backside which pushes blood up to the brain.

Hi MW17,

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.