I am starting a new thread to call attention to bny806's diagnosis, which she shares below in the "double vision" thread. Thanks for telling us. I'm so sorry to hear you have such a difficult disease.

CIDP (chronic inflammatory demyelinating polyneuropathy) is a chronic form of Guillain-Barre Syndrome. It's an autoimmune disease that attacks the nerve sheaths of the peripheral nervous system (MS is similar, but it attacks the central nervous system). A lot of the symptoms of CIDP are similar to symptoms of MG, so anyone who is in diagnostic limbo should ask about it, especially if in addition to intermittent muscle weakness they have numbness, tingling, muscle twitching (fasciculations), or dizziness. All of these can be (but aren't necessarily) symptoms of CIDP.

I wanted to say that those symptoms (numbness, tingling, twitching and dizziness) are not usually MG symptoms, but I am trying to be cautious. I know that MG patients have a lot of atypical symptoms. Muscle twitching, for example, doesn't show up on lists of MG symptoms, but I think there are people here who experience it. Similarly, dizziness isn't on the list, but I know from my own experience that weak neck muscles can make you feel dizzy. So I'm not saying that these symptoms rule out MG, or that they indicate CIDP.

Abby

abby - thank you so very much.. it really means so much to me that you did this and have thought about me. I think the neuros when I was inpatient in the neuroscience center thought I was seriously crazy when I almost smiled when they told me they thought it might be MS- I'm sure most people are quite devestated to hear that news.. but I am still hoping for something "manageable/livable" and having a definitive diagnosis would just help calm my nerves and constantly running mind- I can't stop thinking what the heck is this!?
Another person at my infusion center (ivig every 3 weeks) has a diagnosis of CIDP, says she has slurred speech and droopy eyelids as do I when she is fatigued or IVIG wears off!!! I'm praying the neuropthamolgist might be able to add a piece to the puzzle- and hopefully it will point to a managable illness. thank you again so much! Yall are great!

So, still waiting to see a neuro opthamologist (apparently they are not all that common)! however I had my first rheumy appointment yesterday - she came very highly recommended by a lot of other dr's... she thinks I have sjogrens with neurological invovlement (my ANA went from 1:80 to 1:640 as my symptoms worsened.. also another sjogrens test they did was positive).. so she is goign to start me on plaquenil first for a few months and then add immuran if optimal results not seen by that time.. It seems like a lof of MGers are on immuran, so I thought that would be good for me if needed to see if it helps! The IVIG just isn't helping as much as it used to.. I feel like slowly I'm heading back to what I was before I was admitted into the hospital in the first place - breathing, swallowing, all over muscle weakness worsening.. though the IVIG does give me a boost and make my hands and hips especially work better! it ususally helps my swallowing feel 100% too, but I got meningitis this last time and it hasn't helped that at all hopefully the new meds will help!