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!

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.

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.