Well, now I'm replying to myself. (Is talking to oneself a symptom?)

I saw my neuro - and we agreed that my symptoms are returning - this flare up isn't dying down...but anyhow - the point of this thread was regarding fatigue...

Doesn't seem that the provigil is doing anything... I mentioned the daytrana...he didn't know much about it - so he called the phamacist downstairs....and he is willing to give it a try and he gave me a prescription for it.

Is is a very new drug apparently (wasnt even in the doc's system - they are VERY computerized in his office) - and none of the pharmacies in my area even have it in stock yet - and I live in a major city. So, I will have it on Tuesday and will give it a try.

Actually - it's technically and "old" drug - but the patch form is new.

I also signed the paperwork for Tysabri...but that's a whole different thread.

Wondering still what else others do for fatigue (other than nap 24/7).

~Keri

Never heard of Daytrana - but I'm ready to call my neuro anytime I hear of a fatigue med.



I tried amantadine, nada (or make that nod - a) and provigil helped for a while then quit on me.

My neuro and I talked about combining them, but A makes my stomach hurt - the only part of my body that is, so far, okay. I didn't want to go there.

I was thinking of something that would just up the efficacy of the provigil, but things that do so also up the side effects - like headaches, cog fog.


Grapefruit juice can boost efficacy of statins like 17x - that's a bit much, if it affects provigil the same way.



But peppermint is only 2x. I may still try that for now, see what happens. I still have a few Pro's laying around.

If you try that other stuff, I'd like to know what you think of it.

Keri, I don't know when your last attack was, but I was under the impression it was very recent....and if that is the case, maybe you should allow your body to sleep when it needs to sleep. I am a big believer that your body heals itself while it is sleeping.

If I'm wrong...and it has been a long time since the last attack, the only two meds I'm aware of for sleepiness have been mentioned on this post.

I've tried Prozac, Amantadine and Provigil. Ritalin works the best for me.

Bird -

I'm still in my first exacerbation (the one that brought on the dx of MS in the first place). It's been 6 weeks since dx - and since Dec 22nd since symptoms started. I'm starting my second course of IVSM tomorrow (Saturday). I have been letting my body rest as much as possible - I just don't know that sitting in bed all day every day is good for me (mind or body). I'm going to try to just sit and do nothing except rest this weekend - I had been pretty "active" the last few weekends (not active compared to before this whole thing started - but active enough to where one errand knocks me out). I won't receive the patch until Tuesday anyhow...and I'll try it and see what happens. I do need to be able to function during the day, etc. I'm trying to listen to my body as far as rest is concerned - but it's hard - I'm not used to these limitations (like any of us is until they're imposed upon us)...it's all still new - only been diagnosed for 6 weeks now - so this whole concept of being "sick" is new.

But I'm excited to see if this new med will be helpful for fatigue....maybe it will.


In the meantime, I just keep telling myself to stay put this weekend and rest....

Stay put and rest...
Stay put and rest...
Stay put and rest...
Stay put and rest...

~Keri

Keri, Your going to do what you want to to no matter what anyone is trying to tell you, that's okay, it's your body. And your new to MS and what can and can't be done. Good luck with your second round of IVSM.

I disagree with Bird ( sorry, Bird ) but my experience has been much different and had I sat around, rested and did nothing I would have been in a wheelchair very early on, no doubt about it.

I know you said you don't like to hear about someone elses experiences because you don't know what your MS will be like - none of us do no matter how long we have this disease. But I am going to tell my story - read it or don't, your choice

I was 25 when I had my very first exacerbation. I spent a few months in the diagnostic process, in those few months this is what my symptoms were:

Numb from the waist down including the private area
weakness in the extremities
Tremors in my hands
Extreme Difficulty walking, barely able to get around my home.
pain
L'Hermittes
Vibrations/buzzing from the waist down

I was diagnosed based on a positive LP, neuro exam and symptoms, every other test came back negative including the MRI but back then I also had other tests that are not part of the MS diagnostic tests.

When My neuro told me I had MS I thought, okay now I can get something to "fix" this, wrong. Instead my neuro told me there was nothing he could do other than steroids and to live my life as normally as possible.

My neuro also told me if I did nothing else, walk. He said that might be hard to understand since I could barely move but it would help.

Exercise/Physical therapy is helpful with MS and for fatigue

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

So, that's what I did, walked. At first it was baby steps -to the mail box and back. Then I would sit down and cry - my legs felt like they were going to give out from that small effort, they were vibration/buzzing like crazy and I needed to sleep.

I continued this routine a few times a day with the same outcome and always with tears. Slowly, very slowly I started to notice I was increasing my distance.

I have mostly cervical spine lesions - spinal lesions cause mobility problems. With every exacerbation (except for one) has always severely affected my mobility and everytime I start all over again to walk - I start my mini walking while I am in the exacerbation.

I can't over do it, my body won't allow it.

My current neuro was shocked when he saw my c-spine MRI, shocked that I am still ambulatory without mobility aids. Based on my c-spine MRI I should not still be able to walk, at least unassisted.

I have never used the DMDs and have only used oral prednisone for my first 2 exacerbations, the rest I have waited out. I have had 6 exacerbations in 22 years - one exacerbation for each of these years -

1986
1987
1994
2001
2002
2007

My neuro does not want me on the DMDs.

Will your experience be anything like mine? I doubt it but you never know.

I would caution you to have patience. You have the rest of your life to deal with this disease.

Good on ya, Snoopy for pushing yourself to be your best. I agree this is an important part of the recovery.

I hadn't thought that Bird meant that a person should just curl up in bed and give up though . . . just that they should rest when they are particularly fatigued. My fatigue comes on hard at certain times of the day, and that is not the time for me to do anything taxing. If I don't rest then, it can get ugly.

Other times though, I am less fatigued and more amibitious. That is when I will tackle whatever needs to get done.

Cherie

I agree Bird, although I know this can be very difficult when we are trying to maintain our jobs or look after our family.

Keri, this in not like an infection, where we can just pop an antibiotic and it will be gone in 10 days. I think the NMSS offers some great advice in this regard:

"Many self-help books about chronic illness place a strong emphasis upon regaining control of one’s life, but a battle with MS must not become a battle against oneself.

If a person’s sense of self-worth hinges on being able to control all changes, then his or her ability to adapt to changes will be blunted. Sometimes the best way to improve a situation is to practice letting go of the need to control."

http://www.nationalmssociety.org/sit...msandemotions1

This is an interesting article on MS fatigue:

http://www.lamarfreed.net/fatiguems.html

Not everyone with MS suffers from fatigue and some only do when they are in an attack. I hope yours lets up when things start to improve for you.

Cherie