Monday, August 23, 2010

M.S. Update...

It's been a while since I did a M.S. update, or LDN Update, so here it is. Last weekend we went to family camp. I did something there I never dared to do or even try before (at least not since M.S.). I got in a row boat to fish! It was very hot on the lake and they made you wear a life vest. If I wasn't a role model, I would have taken it off. I mean...I can swim and it isn't the ocean or anything. I wanted to take it off because the added heat is not so great for my M.S. But I dutifully kept it on-mostly because I didn't want the lifeguard to yell at me! The point here is that I was able to get in the boat! (not so pretty getting in or out but I was able to do it!) So, I'm proud of myself!

As far as MS goes. Everything is about the same. I do have bad spacisity (which makes getting into the boat a big milestone!). I so far have not found anything to work. I have talked about it before, you can read by clicking here. It is hard for me to sit for extended periods of time and my legs become numb. I have Tizanidine for this but it makes me so sleepy and my eyes so dry that I really hate using it. I decided to try ibuprofen at a 800mg dosage. And I was amazed that it helped! I thought I found my answer! I'll just take ibuprofen and I will be able to sit like other people. Then on Sunday Fox News had a story about how long term ibuprofen use is linked to strokes and heart attack. That's just great! I can't explain how bummed out I was. Years ago I took Vioxx and Bextra and they worked wonderfully. But then they were taken off the market for the same thing. So, now I am at square zero. What I love about the Fox News report is that they say doctors are now thinking opioids are safer for long term use. I'm thinking....right, like a doctor in my area wants to do that! I can't take that with LDN anyway so I guess I have to struggle along. So now I'm not sure what to do. I go to my neurologist this week so I hope she will have some ideas for me. I found out last visit the reason I can't adjust to temperature changes is from the damage in my brain. I can't seem to go from hot to cold. I get cold under the air-conditioner and hot outside. I know I drive my husband crazy, first I'm hot then I'm cold.

Another thing was the refilling of my LDN. I usually use a pharmacy in Florida. This time when I called they said they can't send to California. I was under the impression that their license had run out or was not renewed for some reason. So, we called another pharmacy in New York and they said "you're in California? We can't ship to California". Apparently there has been some change in the law! Are you kidding me? What's up with that? We found a great pharmacy here in California that knows how to compound the LDN. So if you need a recommendation for a pharmacy located in California -McGuff Compounding Pharmacy is your bet. They got the LDN to me quickly and seems to be fine. I never did find out what law had changed or what the big deal was, but I'm happy to have the medication for the next year. One day at a time, I guess.

As far as LDN goes, I have had no new areas of attack or any serious attacks. I have the spacisity, which is my major problem. I'm so happy to have switched from Betaseron. Do I wish my legs were not cold and numb while sitting? YES, of coarse but I understand that I have a disease and that is the way it goes.

We are planning a trip to Disneyworld at the end of September. Whattt??? I'm hoping knowing I can do it! I may need to embrace the wheelchair.
All in all, a favorable report. Thanks for reading!

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