update: the red, red rash.

I forgot to mention something about Mr. M's red, red rash. While we were at the Miami VA, I decided to ask the brilliant neurologist there what she thought about his rash. She had an idea. (Did I mention she is BRILLIANT?!) Her thoughts:

NIACIN.

Now how easy was that?! She was pretty sure that it WAS an allergic reaction, and the Niacin that Mr. M takes for his cholesterol was her first choice in culprits. Her second was Depakote, but she said the symptoms sounded exactly like a reaction to the Niacin. I am so GRATEFUL to have met this woman. She is just the woman I want for my husband's care.

return of the red, red rash.

Well, it happened again. That red, red RASH made its ugly appearance last night! I took pictures, but the photos just don't do it justice. Poor Mr. M looks awful in them too.



His face looks swollen. The white patches that you see on his chest are places where the rash hasn't affected his skin. Yes, he is usually that white!



Just keep this better image of him in your head, ok?



So, he had the burning, hypersensitive sensation, along with the droopy, "old man" face. Weird, right? Oh-and he saw his neurologist. Guess what she said..."I don't know what it is. You could stop taking one pill at a time to see if it was an allergic reaction." (Yeah, I don't think it is an allergic reaction!) "You could drive to the ER the next time it happens and see what they say." (Umm, first of all, we are NOT driving over 75 miles each way to the VA hospital. Second, if you don't know what it is, what makes you think they will? All they will do is run your typical ER tests and find nothing, and therefor do nothing. NOT worth it.)

Ugg. Can you tell the VA drives me crazy?! THAT is a whole other post entirely! So again I will say, if you have ANY idea as to what this may be, please share!

red, red rash.

(For an interesting article on the diversity of snowflakes, go here: http://www.msnbc.msn.com/id/10839319/)

MS is a funny thing. It is known as a "snowflake" disease because no two patients are alike. Symptoms vary from numbness, to vertigo, to hypersensitivity. Some patients are in wheelchairs, while others are running marathons. Some have relapsing-remitting MS that lasts for years, while others quickly go from relapsing-remitting to primary progressive or secondary progressive MS. Because of the wide-variety of symptoms and effects that MS has, doctors can have a hard time deciphering what to do when something arises.

For example, Mr. M has been on the receiving end of a nasty red rash for about a year now. It comes and goes, especially at night, so we are never able to show it to anyone. We have taken pictures, but it is hard to diagnose from a camera. We have shown them to his primary care doctor, but she referred us to his neurologist. And since the VA is as it is, we will not be seeing her until later this month. So as you can imagine, we are anxious to find out what it is, if she even knows. I will definitely post more on that later if/when we know more about what's going on.

So, as I mentioned, the rash comes and goes, and ALWAYS happens at night. This in and of itself is extremely bizarre. We thought that he was having an allergic reaction to one of his medications at first, but his primary care doctor assured us that it was not. The rash also has a pattern. It starts at the top of his head and neck area, then progresses down his body, going all the way to his toes. And it burns. His skin turns bright red, and sometimes his face looks swollen or droopy. Sometimes the hypersensitivity is so great that he can't continue to lie in bed with the covers on. It is all so strange. If anyone has seen or heard of this before, I would love to hear about it. Hopefully Mr. M's neurologist will have some answers for us. If not, I guess we will just keep searching and he will just keep on enduring.