About medications for MS and what they help in you and me.

I'd like to know of the medicines that we all take. More importantly I'd like to know what they help the most and which ones we've found to be of the greatest help and for what symptoms.

My medications (i downsized many as they had me on so much that if id taken what was written id of never lived, and o.d. would of been likely), I did have one of my doctor's help me in deciding which ones I could do away with for now.

1. Neurontin-helps me with symptoms of shooting feelings in face and limbs ,seems to ease the tremor in my hand, eases the burning sensations that I've gotten (not many times).

2. Baclofen-helps my spasticity and some dystonia. I posted on a different thread the types of spasticity I had experienced this past episode but in addition to what I posted , one eve my right ankle turned toward the right in a very painful spasm/cramp? (not sure what its called as far as contracture, spasm , cramp, dystonia)..I grabbed for the baclofen in the dark and took half of it. In about 5 minutes the foot went back to it's normal positon. Then it did the same again in about 10 more minutes. It was very painful (some of mine are not). I took the other half of the baclofen and again my foot returned to being straight and without pain. This is the first time my ankle has ever twisted painfully outward.

3. Vitamin D. I was told it was helpful and since I am heat sensitive and avoid the sun at peak hours, I do add it.  I can't say I feel any results but I was told by a professor or neuro that it has now been proven to ease many MS patient's symptoms.

4. b12 injections- I was anemic but it was from some periods that gave me quite a time. I was on b12 once every 2 weeks and they were wanting it once per week until they got my lab back that showed my level was back up! I've learned that due to something called intrinsic factor (sp) that some cannot absorb b12 orally. Even 2,000mg of B12 in capsule only converts to 1mg once taken. But the lozenges do work better and you recieve more if your intrinsic factor is ok.

5. Folic acid-all that I really know about this is it went hand and hand with B12 which I now get only 1 time per month and that may even end.

6. magnesium supplement. I had read up on it and purchased it, and when I saw that Gretchen ( i think it was her) took it, I began to also take it.

7. Flaxseed oil for heart health.

8. Green drink I mix in juicer with every green veggie, then I add some lemon juice w/ half of an apple to rid the bitter and other than the horrid pea green look it's very good. I do this for the calcium and antioxidants.

9. Copaxone- subq for r and r ms.

10. I have some opiate pain meds but i do not take those unless i cannot find relief through anything else and sometimes even then i resist.

11. Zinc

The medications that were either not helpful for me or not helpful enough were;

cymbalta

lyrica

tizanadine(sp)

oral prednisone (might of helped but i do not wish to overuse steroids)

thanks,

kiera

I activated your link.

Post Edited By Moderator (Gretchen1) : 1/2/2008 10:34:21 AM (GMT-7)

Hello ,

• I currently have a baclofen pump that has become my best friend , I could not imagine life with out it! The pump has greatly reduced my spasticity and I have zero side effects intrathecally as opposed to orally.

Hi there, very interesting thread.....

1. Copanxone

2. Atavan (only when needed)

3. Atacand for high blood pressure

4. Advil, etc for neck pain and headaches

5. Vit D

Thats all I do take, but I really do get stiff and very hard muscle tension in my neck and shoulder. I also get heart palpatations from time to time, and I do get tremors - they seem to be inside of me, if that makes any sense. And of course the fatigue.  All of these I do not take medication for, and not sure which ones, but I think the posting here has given me some good ideas.

But what about the trembling.  It is more prevalent after I wake up, either in the morning, or after I have layed down to have a cat nap ....any sugestions om meds

Thanks

Gary

Hi there, I just responded to another post of yours, and here I am again. Thank you very much for all of this information in this post. Wow, in a very sad way, it is a relief to me in many ways to see that someone else experiences the same things. Sorry about that - but here is the reason why.  For months, maybe even two years - I have been told by my doctor that the dizzness, the stiff neck, shoulder pains, the inside trembling, etc etc -  was due to stress, overly anxious, etc - that was causing these things to happen.  He has told me this so many time, that after awhile I was starting to beleive him.  He even suggest that I go for therapy, which reluctantly I did, and was told that I seemed to be a very relaxed individual, and told me that it was almost impossible to be relaxed and stressed/anxious at the same time. That when I thought about it - made perfect sense to me. I was told that I had a a medical problem that need further investigation.

So you see, when the trembling happens (and yes, it is very wierd feeling and I do not like it) I was automatcally thinking that I was trembling because of stress and anxiety. I read your post, and in there you mention the inner trembling, and how it happens after you have been laying down for a time - you have no idea (oh, then again Im sure that you do) the relief and confidence now that this has given me to hear someone say the exact same thing.

I will go over the list of meds etc....and again I thank yo so much for sharing this information with me - truly do appreciate your time. I too have been given some neck exersises and things to help with the stiff neck and shoulders...

Have a wonderful day

Gary

Hi there, and thanks. Yes when they did the last MRI they did the head, neck and spinal cord. The neck showed no compressions, a minor bit of arthritis in the neck, but not enough to be of any concern.

I also did stress tests on my heart, and scope tests etc, and found that the heart is fine and working well.  The palpatations only happen once in awhile, and I have noticed that they occur when I get too warm, or when I get tired....etc.... It was happening when I took a hot shower, and funny now, but not then, I noticed to that my hands would get really heavy and numb when I had a hot shower, only to learn that the heat from the shower will bring on simptoms.....so now I have cooled down the shower, and nope, I dont like that either.......

Im learning as I go, and likely will have a ton of quesitons as the time goes by. I just started to learn about all of this as of Dec 11th, less then a month ago.

I beleive that knowledge is power, and I am attempting to get as much power as possible. (No I am not going to starting roaring like a lion, or at least if I do, to ensure that no one hears me!!!!!).

Question if you do not mind.....when I get tired, my fingers tingle more, and the electric shock thingy down my back and into my toes increases - hence, the more tired I get, the more symptoms I get????? Does this sound familiar...

Thanks again, and you to have a great day and a wonderful weekend

Gary

Hi there Kiera, when my mail notifier told me of a new message on HW - I knew it was you!

Actually the only symptoms that I get when I wake up from a sleep is the inner vibration - otherwise when I lay down and nap - the tingling and other stuff - including the foggy head goes way for the most part.

It is just that darn annoying vibration - which wakes me up in the morning, you know, the mornings when you want to slep in. On the mornings when I have to rise early for work, is it there then - of course not.  What the heck?????

One of these mornings I am going to trick it, and not go to work, and sleep in.....ha!!!

Again thanks - to my twin

Gary.....

Well it use to scare me, now it does not, now that I understand what the primary cause is ..... now it just annoys me - oh well it is not the first thing to do that, and I am sure that it will not be the last....

so yes, lets trick this together, I guess Ill have to put in an order for a nice recliner - so that I can nap away.  As my wife says when I get cranky cause I have to have a nap....there are worst things in life than having to have a nap.....I see her point.  She reminded me that I have spent a life time of ways to find ways to sneak in a nap, and now I have the perfect excuse - so nap away.

Now to give you a bit of an idea as to how I have been dealing with this at home - lets face it - if I am down, the family is down, if they are down, I am down - and the vicious circle continues. So I try to make light of it the best way I can.

My wife asked me the other night to help her clean up after supper so that we can both sit down, relax and enjoy a glass of wine. Course my response was "but honey I can't - I have MS you know, and I have to nap"!!!!!!!

I will not and cannot repeat what she said to me! All in fun of course!!

So there

Gary