What you describe is almost identical to my experience with Miller-Fisher Syndrone. The right side of my face was numb and paralyzed. I couldn’t close my right eye or smile from the right side of my mouth. I had problems chewing because part of my mouth wouldn’t work right. My speech became slurred. My vision was blurred too.

MFS is a variant often associated with GBS. You can learn more about it in the frorums here: http://www.gbs-cidp.org/forum/miller-fisher-variants

In my case, the combination of Prednisone and GBS/MFS required surgery to remove cataracts and restore my vision loss. The biggest improvement for my MFS came after having Plasma Pheresis treatments.

From what I have read, the factors that influence damage are medically technical and have to do with lymphocytes in your blood stream. Separate specialized testing must be done to differentiate the three types present in your blood:

B lymphocytes (B cells) are antibody-producing cells that are essential for acquired, antigen-specific immune responses. Fully mature B-cells are called plasma cells that produce antibodies, immune proteins that target and destroy bacteria, viruses and other “non-self” foreign antigens.

T lymphocytes (T cells): Some T cells help the body distinguish between “self” and “non-self” antigens. Others initiate and control the extent of an immune response, boosting it as needed and then slowing it as the condition resolves. Other types of T cells directly attack and neutralize virus-infected or cancerous cells.

Natural killer cells (NK cells) directly attack and kill abnormal cells such as cancer cells or those infected with a virus.

Those of us with GBS have immune systems that produce abnormal lymphocytes at some rate. Rates vary by individual and I have not heard of any way to effectively predict that. In my case my immune response was quite strong and I became completely paralyzed in 10 days. Others report a much more gradual progression.

Plasmapheresis (PE) will remove the GBS lymphocytes, but not stop your immune system from producing more. IVIg will stop your system from producing more, but do nothing to reduce what is already in your blood stream.

Hope this info helps.

I had been a semi-professional tennis player and was in very good physical condition pre-GBS. GBS took me to being a quadriplegic in 10 days. That was in 2008. I was subsequently diagnosed with CIDP/MFS in 2009 and I am still wheelchair bound today. I don’t think physical conditioning pre-GBS has much to do with post-GBS recovery.

The disease attacks the fatty insulation (Myelin) that surrounds the nerve fibers (Axons). Without the insulation the nerve signals simply short out before reaching the muscles. The muscles themselves are still there in whatever condition they were pre-GBS. The muscles begin to weaken as we are no longer able to exercise them. In my case my legs and feet atrophied.

One of the keys to a better post-GBS recovery is how much Myelin damage was done. The body can rebuild Myelin at the rate of 1 millimeter a day, which is only 0.0032808 ft, this is extremely slow but there has been little that can be done to speed up the process. I don’t think physical conditioning has much to do with Myelin growth.

Getting early treatment for GBS is the best way to get a better and faster recovery. If you are lucky enough to have a mild form of GBS you will recover sooner and more thoroughly.

Here is a survey you may find interesting: http://mycidp.weebly.com/doctors-seen–fitness-levels.html

Although GBS peaks in a relatively short time (couple months), a return to post GBS abilities will take considerably longer. Many report still having some GBS symptoms years later. When the symptoms do not clear up sufficiently after a year or so, most doctors would consider it CIDP. There is another, much rarer, form of GBS called Recurrent-GBS (RGBS): http://www.ncbi.nlm.nih.gov/pubmed/18931012

PE will wash out the IVIg. Best approach might be to have three PE treatments to remove the bad anti-bodies (found in Lymphocytes). Then start IVIg or SCIg to help stop your immune system from producing more bad anti-bodies.

I had teeth pain, but I don’t recall a feeling of crushing. My weird sensation was I felt as though my legs and feet sank through the bed and was almost touching the floor.

Treatment costs for PE or SCIg are overly expensive and I think many of the inflated medical prices are due to corporate greed. I had a bill totaling $50K at one point that was not covered by insurance. I found the hospital had a special program for those with financial hardship and I applied. The bill dropped to a few hundred dollars and I made payments over time. I had a similar experience at another hospital and did not qualify for their financial aid program (I won’t use them for that reason). The criterion for financial hardship varies between hospitals.

What town do you live in? Have you looked into the financial aid programs available from your local hospitals? Have you received quotes for SCIg and PE? I have found that these costs are almost always negotiable.

I ran across a website that looked like you may have been posting to:
http://oritoday.pp.ua/ori.php?v=0ozrbMiMpbg&feature=youtube_gdata_player&titl=My%20CIDP%20story
The website contains videos from Dr Shaoulian under the name NerveMDorg. I apologize for any confusion if you are not involved with this website.

If you haven’t already done so, you might consider posting your story at the CIDP Survivors website here:
http://www.livingwithcidp.org

I wish you the best of health and hope you get back into cross-country soon!

Another way to search on the forum is to click another members’ name in a post. This takes you to their profile where you can learn more about them. If you click their “Topics Started” or “Replies Created” links, you can read through all of their posts.

This type of search can also be usefull if you want to learn what they had to say on a particular topic of interest to you.

You do not need to be signed in to use this feature!

Too bad there is no way to contact other members directly. The only way this could be done at present is to add contact information in your profile. Then others could contact you using the method(s) you choose. Since this could be added as text buried within text (example: n a m e AT g m a i l dot c o m) it would be quite safe from spambot harvesters and scrapers.