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

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Kiera
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Date Joined Dec 2007
Total Posts : 364
   Posted 1/2/2008 5:08 AM (GMT -7)   
Anyone who would like to respond feel free. If not I understand that some are private about certain matters.
 
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
Every day brings us closer to what we reach for .........in all things.
 
Kiera


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/2/2008 7:33 AM (GMT -7)   
Oxybutanin -- the generic form of Ditropan for bladder control. Betaseron -- to slow the progression of the disease, and reduce the intensity of any exacerbations that do occur. Ibuprofen -- to diminish the side effects of the Betaseron (only occasionally these days; been on Betaseron for 15 years now). A multi-vitamin when I remember it, and lutein for my eyes (I have some signs of early macular degeneration, NOT related to having MS, but to age..I'm nearly 61). That's all.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 1/2/2008 9:34 AM (GMT -7)   
Neurontin and tysabri. I also was given baclofen to take at night (10mg) when I need it. I have only taken 1/2 two times. Calcium with vitamin D. Advil or tylenol occasionally. I also take nexium (gerd), benicar (blood pressure) and zocor (cholestral). I also have a prescription for clonazepam that I have taken occasionally for muscle spasms. I'm not sure if it really helps.

I am interested in hearing about the magnesium supplement. I asked my neuro about supplements and he was not a big fan. He said I did not need B12 as I did show a defiency. My pcp had suggested it. He said I could take fish oil if i wanted to. but I had trouble tolerating it. He told me to stay away from zinc.
Barb/mystery reader
Diagnosed April 2007


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/2/2008 10:07 AM (GMT -7)   
Hi Barb,

Did he mention why you should avoid zinc? I found it to be listed as one of the supplements for ms persons although i'm sure there are many reasons not to take some of them, and for different reasons and different persons.

Zinc is for immune health and to be very honest here...ive only taken it twice. Because of the fear that building up my immune system will make the MS strike harder. That's what I was initially told to avoid doing. Now doctor's recommend alot of diff supplements which make me wonder. I think I'll leave the zinc alone.

Magnesiums role in Ms can be found at this site, along with many others:


http://www.nationalmssociety.org/site/PageServer?pagename=HOM_LIVE_medications_used_in_ms


kiera

I activated your link.

Post Edited By Moderator (Gretchen1) : 1/2/2008 10:33:17 AM (GMT-7)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/2/2008 10:12 AM (GMT -7)   
Here's a web site that tells you more than you probably want to know about zinc:
http://dietary-supplements.info.nih.gov/factsheets/cc/zinc.html#extra

I think I get MORE than enough in the normal foods I eat regularly. But then I think that's true about MOST supplements. Unless the doctor has done tests on me and shown me that I have a deficiency, I don't mess around with supplements.

 

 

I activated your link.

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


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 1/2/2008 10:49 AM (GMT -7)   
 
I take Copaxone, baclofen as needed, klonopin as needed, and adderall.  I take a whole host of supplements.  I do not take a multi-vitamin as it can boost the immune system (according to my docs). 
 
Coq10 - for heart health
 
vitamin D - nerve conduction
 
magnesium - nerve conduction and muscle function
 
niacin - anti-inflammatory
 
DMG - anit-inflammatory
 
crannberry extract - reduces UTIs
 
 
 
Below is a link on magnesium.
 
 
 
Love and prayers,
 
 
Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 1/2/2008 12:32 PM (GMT -7)   
I actually did not ask him why I should avoid zinc. I assumed it was for the same reason he told he to avoid vitamins that may boost my immune system.

He also is of the opinion that you should eat a balanced diet and receive nutrients in that way. I asked him about dairy and he did not agree with the argument that you should avoid it. He just seems to emphasize moderation.

I think I may try magnesium. I have also considered cranberry extract although I have never had a UTI. People on tysabri do seem to get them more often. I probably should check with him first.
Barb/mystery reader
Diagnosed April 2007


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/2/2008 2:44 PM (GMT -7)   
I just read my magnesium bottle and it contains zinc hmmm. I probably get enough zinc from fried oysters and cheese. I'm a cheese lover.

I had more luck with 1 bottle of gatorade followed w/2bottles of water to keep uti's away. The soldier's were given that info while in the dessert so i thought id try it and this is the longest ive been without one.

The lady I met who was inspirational def told me to get B6 and she's had alot of years at this and will take her advice on that.

I always tell my doctor's any supplements that I decide to take.

I would get enough vitamins through food except for the episodes when I discover that Ive failed to eat much of anything for 2-3 days due to pain, fatigue and my bad.

thanks for activating the link Gretchen, although I accidentally put the wrong one there, your's is what I'd tried to insert.

kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/2/2008 2:54:05 PM (GMT-7)


got better things to do
Regular Member


Date Joined Jan 2006
Total Posts : 176
   Posted 1/2/2008 7:46 PM (GMT -7)   
Hello ,
It's been a long time for me since I have posted ,but i thought this was an interesting thread.
 
I am currently taking avonex,xanex (only when i need them for anxiety),Ibuprofen  and adderall for fatigue.
 
  • 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.


Just when I was getting used to yesterday......Along came today.
 
             
~~LIFE~~

Post Edited (lifewithms) : 1/2/2008 7:57:00 PM (GMT-7)


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/3/2008 12:45 AM (GMT -7)   
How long have you had Ms? The reason I ask is I'm curious as to how long you've been on the baclofen pump?

What side effects did you experience orally that were adverse if any?

I'm glad that it's reduced your spasticity!


thanks

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/3/2008 12:48 AM (GMT -7)   
Update:

I also was given provigil (Sp) for fatigue. I have only taken it once, the amatamadine (sp) didn't work at all. I'm not certain how well the provigil works because I'm so reluctant to take another med.

If i try it when badly fatigued, I'll let you know.


thanks
kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


got better things to do
Regular Member


Date Joined Jan 2006
Total Posts : 176
   Posted 1/3/2008 4:27 AM (GMT -7)   
I have been diagnosed with MS for 2 years now,I was in limbo for a couple years also. I have had my pump almost a year , it took some getting used to but I couldnt imagine life without it now.
 
Oral baclofen did not help as much and I had side effects . I have the normal MS fatigue but on oral baclofen I could times that fatigue by about 3.      
 
I have normal brain fog with MS,when I took oral baclofen I was really challenged..LOL
 
I have zero side effects with intrathecal baclofen and my spasticity is very minimal. The pump has given me much of my life back.
Just when I was getting used to yesterday......Along came today.
 
             
~~LIFE~~


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/3/2008 5:18 AM (GMT -7)   
Praise the Lord!

I'm thrilled to see an MS person be able to say " Given me back much of my life"

was spasticity (obsioulsy so i guess) your major symptom? Do you suffer from other symptoms as well and if so , would you mind me asking what they are and what you feel helps yours?

This was posted so we can all try to find things that may help us oursleves in the future tongue
thanks
kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera


got better things to do
Regular Member


Date Joined Jan 2006
Total Posts : 176
   Posted 1/3/2008 9:36 AM (GMT -7)   
  I would have to say that the fatigue is really bothersome and was a symptom before diagnosis. I find adderall helps. I have tried provigil and did not seem to help all that much.
 
  Spasticity came a little later in the game but packed a big punch with me. I have tried valium and baclofen together orally and did not get all that much relief. It wasnt until my neurologist gave me the golden ticket for a baclofen pump did I feel like me again. 

 


Just when I was getting used to yesterday......Along came today.
 
             
~~LIFE~~

Post Edited (lifewithms) : 1/3/2008 9:45:06 AM (GMT-7)


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/3/2008 12:45 PM (GMT -7)   

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


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/4/2008 3:38 AM (GMT -7)   
I'd feel wrong to suggest a medicine for your tremors as I cannot say with absoluteness what has truly helped mine. Neurontin seemed to be my best bet when I'd experienced those. Other's may have much better answers for you and post them here:)

I've felt exactly what you describe as tremors , inside. There is actually a name for that (escapes me for the moment). I call them my vibrating spine. So although it's not painful, it's definitely scary and wierd feeling. Such an unnatural feeling. Your not alone in it though. Some parkinson's meds can be helpful, but youd need to consult your doctor about those. Cogentin had been given me at one time for dystonia, the spreading of my fingers and toes (painless), i do not take it as it isn't painful, and so far (Lord willing will remain this way) not hindering any function.
 
I've also noted that my vibrations inside happen after I've been lying down. They have this listed as lehermitte's (sp)  sign, however that usually happens when you bend the head forward, and it produces a shock, tremor, stab down the neck/shoulder/back area. That is not how mine happens.
 
This is my 4rth edit for this post (wow im doing good: giggle), a doctor gave me some neck exercises that help my stiff and sore neck/shoulder area. If you'd like, just ask and I'll try to explain them to you. They only take about 30 seconds each time you do them and can be done 4 times a day to strengthen those tiny muscles in neck to take the stress off your spine. Also, getting a  good pillow thats made to fit the natural curves of your neck is great. I've found it to be excellent.

Thanks for sharing and adding  to this thread.

thanks
kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/4/2008 3:55:13 AM (GMT-7)


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/4/2008 9:32 AM (GMT -7)   

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


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/4/2008 12:32 PM (GMT -7)   
Well i doubt that yours is anxiety. Question for you though? Have they mri'd your neck to see if maybe a root nerve could have a disc pressing on it? It's possible that the answer (if its not MS) lies in your neck area. If you haven't had an Mri of that area i certainly would. Things can pinch/press/protrude in the cervical area and cause alot of what we describe as those vibrations.

The good news is that mine stopped. They lasted for about 6 months and usually during an episode. Now i dont ever feel them. I really dont wish theyd come back either!!!!!

Let me know if you've ruled out pinched nerves and other such things in the cervical area? Have any other medical tests been done and what were there findings?

No, your not alone, i vibrate too lol!

kiera

p.s. as far as the heart palps, i have those (we must be twins). I've also made sure to have a stress test, exams for the heart of all kinds to ensure my heart is ok. I do tend to think that the palps are anxiety in origin (in me that is) due to the fears/stresses of learning to cope with  this. Each morning I wake up, its as if i suddenly remember again the state of health im in..and then the palps.

Do not leave this part unchecked. There's not one doctor, nor one patient that would suggest to guess about the heart. Great wishes and have a good day!!!!!!


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/4/2008 12:39:48 PM (GMT-7)


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/4/2008 1:35 PM (GMT -7)   

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


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/4/2008 1:54 PM (GMT -7)   
Famliar? Yes we are twins!

When fatigue begins to hit or i decide to lie down for a bit, numbness in hands become a thing to be counted upon. When i was having the shocklike sensations it would be with lying down or just getting up from lying down. It has really made me hate naps. I'd run from them if I could. The only problem is the fatigue doesn't allow for that.
 
It's been long noted that Ms persons aren't to overdo it (this can mean even small tasks on opportune days with this). Feeling tired does bring on more pins and needles for me and morer symptoms in general, unless im in those blessed full remissons (what I call more than days of feeling brand new).
Pacing yourself is a must. Just as we are learning how to avoid the hot baths/showers we once loved, we also need to not "overdo" it. This does tend to deplete more than energy. It tends to open us up for more symptoms. Try to take periodic breaks throughout the day, even when feeling fine, so as to avoid that "overdo" thing.
 
Laying down is a whole thing of it's own:

I've considered two reason's this may be happening when laying down brings on symptoms (my friend with ms cannot lay down and sleeps in recliner)...
1. impingment on an already Ms diseased spine?
2. Like heat and hot water, lateral positions tend to trigger us (more probable but less explainable)

Gary, you can know that your not alone. I dread to laydown in daytime hours. I hate it. It only seems to bring on symptoms. The doctor's cannot answer this and when ive asked them my two theories, they seem to think it could be a bit of both.

Find a good antifatigue med and don't lay down (just kidding, but maybe im not?)..also this might help you to not experience this excessive tingling and shocks. Have you asked about a medicine for fatigue. I've seen some say provigil works, some it doesn't work for. Atterol (sp) is another one that seems to have success. Even with the medicine you'll need to learn to take short breaks that will help your body to do well through the days.

thanks for sharing
kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/4/2008 2:03:18 PM (GMT-7)


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/4/2008 2:00 PM (GMT -7)   

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.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/4/2008 2:07 PM (GMT -7)   
Ok you trick yours and i'll trick mine. I'll sit up in bed and sleep in the chair. We will win this war yet! eh?



Smiles Gary!

When it vibrates try to not let is scare you (easier said than done), just think of it as you did before you met me , tremor. Harmless, just a bit shaky (power of suggestion here).

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/4/2008 2:15 PM (GMT -7)   

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


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/4/2008 2:30 PM (GMT -7)   
lol!

Just let her know that you dont have to sneak any longer, your not napping anymore (nudge) your pacing!

The homelife is effected alot. Adjustment here has been a long thing. At first it was no support but now I think my husband is sick of seeing me sick and now escorts me to doctor's and knows about as much about the illness as I do.
I was always a person who went and went. Always going somewhere. He was the opposite. Hated to be in public and claims he hates people (dont give him a mirror).

So, in that sense its not affected us. He never wanted to go anywhere anyway. I haven't cramped his go getter style at all.

The things around the house like helping clean things up and such, he's been pretty good about after the initial nonsupport. I still push myself (i will pace i promise) to keep my house as before and sometimes wonder if im that worried that im Fronting for others? On the days that fatigue visits i have no choice. Nothing gets done that should be done.

He used to be a clean freak like me and that stopped. It's now returned, which has for sure been a great help to me around here.

Keeping cool in the summer is another thing I'm still working on. Different methods, and its all trial and error.


Have enjoyed your posts today.

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera

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