Tuesday, March 29, 2011

Here it is....

I may as well milk all the Irish cheer you can out of my St. Patrick's day celebrations! Notice my awesome vintage pearl pendant! I have a whole range of items from them and truly love them all. I'm thinking about getting Gene and I matching bands for our 35 wedding anniversary this coming year...but I digress..you are wanting the long awaited M.S./L.D.N. update.

Let's just say it...Secondary Progressive Multiple Sclerosis. Ok...I said it! I have been upgraded from Relapsiping Remitting. What this means to those of you who are not up on the disease of M.S., I'm getting worse. Now....I'm not having new episodes-meaning attacks in areas where I have never had an attack before. I am having a worsening of existing symptoms.
My doctor wants me to take this medication. The sales pitch is a huge binder with a CD explaining how great it would be for me. I watched it. And, I don't know, it seems to this drug is more for RR than for SP, I was on Betaseron for 5 years and was always sick (with horrible flu like symptoms) then I had another bout with Opitc Neuritis. You can see what it does to you by clicking here.

I decided then to stop the Betaseron and try a new drug called Low Dose Naltrexone. I have been on this inexpensive, invasive medication for 5 years now. I can say am fairing better than on Betaseron but to be fair I am definitely progressing, meaning-I have no new areas of attack but the old already damaged areas are experiencing more problems. Thankfully my optic nerves seem fine.

Here is a list of some of the things I struggle with:
1. Numbness. My Neurologist says there is nothing that can be done about this.

2. Strange nerve pain and sensations-pain that arises from nerve dysfunction and not as a result of injury. I have been given Gabapentin, 300 MG 2X a day. It was helping enormously but not not so great now.

3. I have terrible stiffness (spacisity). I have been prescribed Tizanidine. I don't like to take it because of the side effects, but I have to lately because I'm so stiff and sore that I have to do something. So, I'm altering my make-up because the Tizanidine make my eyes so dry that I need artificial tears. Which ruins my make up.(girls and vanity!) I'm not to happy about this.

4. I have been taking 600 MG of ibuprophen 3X a day to cope with the pain. I know this is not optimal, but sometimes you have to do something. I have pain in my muscles like you do when you over exercise. You know, the sore all over feelng. Well, I have that all the time but it just doesn't get better! This is a problem because the body tends to not want to move the area where you are sore and this can cause you to fall. And I have done a lot of that lately. Well there it is. Not to great. I don't know if the progression of the disease is because of stopping the Betaseron or just because that's what the disease does. It's kind of a sad time for me. There are worse things to have and I'm sure I will cope. I am considering using the Copaxone, if it can be done in a economical way. When we went to the pharmacy, they wanted well over $1500.00 a month. Well, that is not going to happen. I don't want to stop the LDN. One thing that bothers me is this comment "all of the CRAB drugs (Copaxone, Rebif, Avonex, Betaseron) are pretty much equally effective overall". How can this be true? Then there is this "Copaxone (glatiramer acetate) is a different formulation than the other CRABs, which are interferon-based. Therefore, it has different side effects -- it does NOT have the flu-like symptoms, possible links to depression,T potential liver damage or effects on white blood cells or thyroid function of the interferons. This makes Copaxone a popular choice for people working full-time, mothers of young children or other people who cannot afford down time due to side effects." That sounds good, right? I just wish I felt more confident about this drug.

I'll keep you posted. Thanks for reading.

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