tysabri.

Mr. M has decided to take Tysabri, a newer MS medication that was at first approved by the FDA, then pulled off the market, and is now back on the market. He was on it once before, but it became too expensive for him to continue the therapy. But since Mr. M is a veteran, he has the privilege of getting all of his health care done at the VA. This is both good and bad. Good, because his health care is free,and as many of you may know, MS is an EXPENSIVE disease. Bad, because we have to drive to the Miami VA once a month in order to get this medication. In the past, we have been charged $5000 a month for this treatment, but now that Mr. M is using the VA, we are able to get him the treatment he wants and needs.

Yesterday we made the long, long trek to Miami. It took us three hours and we saw a total of 5 car accidents, 2 of which were cars that had flipped. It was pretty scary. We had to be there by 9:30 am, so we left our house at 6:00, dropped off the kiddos, and went on our way. We arrived by 9:15, but parking was TERRIBLE, so it took almost 30 minutes to find a place to park. We eventually made it in, and started the process for his first treatment.

Tysabri is considered a biologic therapy, but must be administered in the chemotherapy department of a hospital, by a specially-trained nurse who has been "TOUCH" certified by Tysabri (the company). We spent an hour filling out paperwork and talking with the doctor, and then waited some more while the pharmacy mixed up the medication and brought it to us. (The medication does not last long once it has been mixed up, so the patient must be in the chair waiting for it before the pharmacy will mix it.) Then Mr. M was given his IV and the Tysabri drip began. The drip takes about one hour, but the patient must wait for another hour afterwards, just for observation. We finally arrived home by 5:00, and overall everything went pretty smooth.

As with any medication, there are some risks associated with Tysabri, which both Mr. M and I have fully considered. The biggest risk is an infection in the brain, called PML, that can develop while taking Tysabri. But his doctor is going to be monitoring him monthly and we are hopeful that he will not contract PML. His doctor is a genious. She is so smart, and deals only with MS and Tysabri, so she is pretty much an expert. She has a wonderful bedside manner and is so personable. We just love her. I only wish we had met her sooner.

**If you would like more information about the drug Tysabri, click here:

http://www.tysabri.com/tysbProject/tysb.portal/_baseurl/threeColLayout/SCSRepository/en_US/tysb/home/index.xml

insomnia.

Mr. M is such an insomniac! He hasn't been able to sleep for the past few nights, and last night he was up all night long. It's not the first time he has done that, and it probably won't be his last. Sure, his doctors give him sleeping pills for this exact reason, but he hates to take them.

First of all, he is already taking too many pills. Second, he always gets a "hangover" when he takes most any kind of sleeping pill. (He has tried many different kinds.) Of course he could always take an over-the-counter sleeping pill, and those have worked for him in the past, but they don't always work, and if he takes one of those then he can't take a prescription one. Othertimes he just doesn't want to take them. He hates taking so many pills. I think sometimes he is hopeful that he will eventually fall asleep on his own. Many times he does, after several hours of trying. Then of course, he is completely exhausted during the day. So he is fighting his MS fatigue along with his insomniac fatigue. Thus we have a vicious cycle. And you know how I hate to watch him sleep. It is all so very frustrating.

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.