Scared and Confused?!

    • Anonymous
      April 2, 2013 at 11:20 am

      I was diagnosed with GBS Feburary 2013. Started with super tired eyes and progressed to my legs up my body back to my eyes where I had left eye palsy. I spent 6 days in the hospital on IVIG. I came home and though I was unsteady seemed to make really good progress. Yesterday I thought that I would be adventerous and drive down the road (mind you I still have double vision and wear a patch) to my place of employment to visit. I was there for 3 hours and then came home and cleaned a little. This was more than I am used to. I hadn’t had a lot of sleep the night before and I couldn’t sleep last night. I feel HORRIBLE! My left arm is heavy, my pectorial muscles are heavy, my diaphram is weird feeling so much so that it is pushing acid up into my esouphagus and I am constantly gagging and wanting to throw up. I don’t know if I caught a bug or something or what? I don’t know what is normal, when to call a doctor, when to seek emergency care. My Neurologist has only seen this one other time in his 20 years of practice so he kind of just sent me home lost. I didn’t know if anyone could offer me any advice. I can breathe okay and my blood pressure is pretty steady. It is up and down within normal limits I guess. I just don’t know when to panic?! I guess I already am which is probably making it worse.

    • GH
      April 2, 2013 at 4:22 pm

      It is very important at this stage not to overexert yourself, and you must monitor your strength daily to determine if you are experiencing a persistant loss of strength. This would be an indication that the disease is still active. This must not be confused with temporary weakness due to exhaustion. If you continue to lose strength due to demyelanation, your neurologist needs to check it.

      I am not clear on what, exactly, your neurologist has “only seen … One other time.” Is your neurologist experienced in treating GBS and CIDP?

    • Anonymous
      April 3, 2013 at 2:22 am

      No he is not. I live in a small town and he has only treated one other case. I have seen a specialist since who confirmed by diagnoses. I have had some upper body weakness and I don’t know if I have caught a stomach bug but I have had severe stomach pain, gagging, and diarrhea. I slept for 8 hours today and I don’t really feel all that different. I called my specialist’s nurse and she said go to the ER if I have shortness of breath or chest pain… So I am just trying to calm my anxiety and take it easy. Thanks for your response.

    • GH
      April 3, 2013 at 3:49 am

      Not all symptoms will be a direct result of GBS, but the stress of fighting one illness can make the body more susceptible to acquiring another. Your GI problem does not seem like a result of GBS to me, but I won’t attempt to diagnose it. Your primary physician should be looking at that. Keep in mind also that even experienced neurologists sometimes misdiagnose CIDP as GBS, which is why you want to be aware of possible relapse.

    • Anonymous
      April 3, 2013 at 6:08 am

      I do think this is unrelated with GBS, I was diagnosed as AIDP and had a moderate case so that is why i think i freak myself out over having a really bad relapse worse then the first one. So have been doing a lot of thinking and I am just going to focus on getting well and not freak out over what could happen.

    • GH
      April 3, 2013 at 6:18 am

      That’s a good approach.

    • September 23, 2013 at 3:38 pm

      When I was transferred from a general hospital to a rehab hospital after my IVIG treatment, I threw up every time after my physio appointments for a while. Being completely paralyzed, the physio folks did the moving for me but just sitting in a wheelchair and having my legs moved completely exhausted me, hurt like hell and was an overexertion for my weak body.

      Perhaps, you overdid it so soon after getting home? Sounds like it was a pretty busy day for you.