Annie, Becky, and Joan

Thanks for all your feed back. To follow-up on a few of your questions.

1. RE one sided weakness: for years I expected my diagnosis to be MS. It wasn’t until this episode that I started feeling weaker and needing naps nearly everyday that made me explore a broader differential of diagnosis (MS, MG, spinal muscular atrophy, and a few more). I’m not sure why my left side is weaker than the right, the only thing I can attribute it to is that I am left handed and thus left side dominant so it gets used the most.

2. Yes I did have shingles on my left forearm in February 2008 (It did cross my mind as to why I would have broken out with shingles during a time when I was otherwise healthy. For those of you that may not know, -Shingles is a latent form of the chicken pox virus. The chicken pox virus that many of us had years ago, can camp out your central nervous system. The antibodies that your body made against the virus are to large to cross the blood brain barrier so the virus virtually goes undetected in your nervous system. This isn’t a problem for most people as it doesn’t do anything while it’s hiding out in there. Should the virus get bored and try to escape then normally your body’s antibodies will kill it as soon as it merges. However when your immune system isn’t functioning optimally and is focused on something else, well then your body doesn’t see the little bug on the escape and you end up with shingles.) So yes its funny that you mentioned shingles. It’s just one more thing that shows how messed up my immune system has been.

3. Tests: MRIs in 2003, 2007, & 2009. I do have a lesion from L1-L3 (found in 2007) which has been read as benign and there was minimal change to it in June when I had my most recent MRI. Otherwise the rest of my brain and spine have been clear. LP in 2003 was also normal.

4. Hot & Cold: I definitely have an aversion to heat. I also believe that because the steroid infusions ramped up my body temperature for the last two weeks that, that may have played a big part in why my symptoms became even worse. Just knowing my body, I have a habit of trying to stay in cooler environments.

5. Thanks so much for letting me know that I’m not crazy. I couldn’t make sense of why I was having mental confusion if my hunch was based on a disease associated primarily with weakness. Just knowing someone else has experienced the same or similar things gives me more energy to continue bugging my Dr. to look at my concern for myasthenia further.

Update: I did start taking the provigil today that my Neuro prescribed. This has been the first day in months where I didn’t need to take a 4hr nap. I’m trying to pace myself and not do to much but it’s amazing to be able to wash the dishes and still have energy afterwards.
Seriously my sister and I have had a running joke for months now that my plan for the day is always to clean. But everyday off I always end up needing to sleep to recuperate before another day at work and the cleaning always gets puts off to the next day.
Just so you know I am actually a critical care nurse so I do have a lot of medical knowledge and insight. However my specialty is in pediatrics not in adult medicine. I didn't mention that I was a nurse in my original posting because I didn't want to inhibit any responses. I came to this site because I knew that the best knowledge and insight I could gain would be from all of your experiences and not something out of a book.
Now that I can think straight again and stand my ground I plan on insisting that my neurologist listen to my concerns more. Even though in my head I knew my thoughts were right I just needed a little push of encouragement. You guys have definitely given me that push and I can’t thank you enough. (Also on a side note my Primary MD is diligently working on getting me in for a 2nd opinion).

Kate