Sunday, October 26, 2008

To answer Tamara

I received a request from Tamara on the very first post I did, way back in October of 2006. I thought I would answer here, because it is an archived post, and I wasn't sure if she would see the answer.

Here was Tamara's comment:
Tamara said...

I was diagnosed with MS about 1 1/2 yrs. ago. I have been taking Betaseron. I recently stopped taking it, and already feel better. I had been having dark/depressing thoughts in the last 6 months. How is the LDN working for you now? Any side effects so far?

My answer:
Hi Tamara!

Thanks for stopping by and visiting me. I have a couple of updates posted. I will give some general answers and if you want more detail you can click on the link listed below.

I have been off Betaseron for about 2 years now. I haven't looked back, not even once! If I am honest I admit my M.S. is not really "better". I am stiffer than when I was first diagnosed and have a limp. But, I feel so much better mentally and physically after coming off Betaseron. I have M.S. (diagnosed for 13 years) and so far there is no cure for it. But the LDN seems to be keeping it from progressing. I haven't had any NEW relapses or symptoms. The biggest problem I have is spacisity. I have tried whey powder, as was suggested by a nice reader. But frankly, it is just too bad tasting and it is too much work to have the shakes every day. (several times a day) The heat seems to really make the things I struggle with worse. (walking for example) But, I just try and work with the heat. It is hard since I live in an area that is really hot in the summer. (and by summer I mean May-October) Today it is suppose to be near 90!

I do become discouraged at the things I can no longer do, or do well. I think anyone with a life changing disease has to go through this kind of discouragement and depression. The truth is that there are worse things in life than having M.S. (or even forms of M.S. that are much worse) I have learned not to try and do things that are too much for me. I don't "look" sick for the most part, and that can be a problem. People often think I can do things I really can't. The problem is, when you try to manage your disease you can end up alone a lot of the time. I have learned to say "no" to a lot of things. But I digress!

The medication that really helps me with my side effects (of M.S.) are:

1. Provigil. I really couldn't do much of anything without this one. It is a medication used for narcolepsy, but it is being used in M.S. to help with fatigue. It works great. I have no side effects from it. Just don't take it late in the day!

2. Tizanidine. It is for the spasticity. It helps a lot, but has the side effect of making you sleepy. So, I take it at night. During the day, if I am really bad, I take a 1/4 dose. It helps. I have also tried a herb called Valerin from Wonder Labs. It helps a lot too. As I mentioned before, I tried the Whey Powder advised by a commenter, but I just can't do it with any regularity. So, I can't really say if it works or not.

3. Low Dose Naltrexone. I have gone up to the normal dose of 4.5 MG. I have no side effects and am very happy with the treatment so far.

So, Tamara, I am very happy with the LDN. I really wouldn't change what I am doing, except if they found a true cure! I would not recommend nor would I take any of the typical disease modifying drugs. I am not convinced they really work. I took Betaseron for 5 years and can't see it really helped my disease course. I felt terrible on it and at the end I started having serious new episodes, like Optic Neuritis in the opposite eye. All the spacisity happened at the end of the Bataseron treatment not since taking LDN.

As promised click HERE for a link to my other updates.

A few thoughts- Enjoy every moment you have! M.S. is not a death sentence. Enjoy your life within the boundaries of the disease. Find new things that you can learn and enjoy that doesn't depend on your body performing perfectly (hence the photo...I try to take fun, interesting and unusual photos). Don't let people tell you how to manage your disease. You need to research it and make the decision you feel is right. This disease is not like others, there is no treatment you must do. They try to scare you with the threat of a wheel chair if you don't take the standard treatment. Most people who have M.S. will not be in a wheel chair even if they don't have treatment. I truly wish you all the best! May the Lord bless you!

The thing that really gives me strength is my relationship with Jesus. He is the one who is always there. And my church, the people are always there and ready to help in any way I should ask. (I never really ask, I guess I should learn how to) And of coarse my family is so wonderful. I am so blessed to have my children live near me so I can have the benefits of being a Grandma!

And when I am really down....I can go to Disneyland! Life is great! Stop by anytime.

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