Awwww, Cheryl....I hope you're sleeping your little heart out, right now.. Sometimes after having a fitful nights sleep, my best sleep is when everyone else is getting up.

I think you need to have a heart to heart with your Doc and see if he/she can do a little better for you, than leaving you hanging out there to dry. Trial or no trial, this is no way to treat a patient.

Sending prayers and hope, that it gets better for you soon.

hi ya fly girl,

how about trying some vit c and i mean the good kind from a vit store? i have seen the stuff work with several of my mothers caregivers in the past at warding off a cold if they were coming down with one and cut it short if they already had one.....therefore i firmly believe it does help.

we all know by now that sleep is a "must have" with ms and the type if pain that keeps you awake makes me cringe. crack that whip girl regardless of the trial and get yourself some relief. you DESERVE that gently

[QUOTE=peachyplane;301047]hi ya fly girl,

how about trying some vit c and i mean the good kind from a vit store? i have seen the stuff work with several of my mothers caregivers in the past at warding off a cold if they were coming down with one and cut it short if they already had one.....therefore i firmly believe it does help.

we all know by now that sleep is a "must have" with ms and the type of pain that keeps you awake makes me cringe. crack that whip girl regardless of the trial and get yourself some relief. you DESERVE that gently

Funny I should SEE this thread right now. I USED to have terrible RLS but not so much recently. Just a couple nights ago though, I DID have entire body RLS IF there is such a thing. I find if I do too much that day ie running up and down 5 flights of stairs carrying bags or heavy laundry etc THEN that night I will have a problem BUT IF I try to strech out the muscles in back of my knees that helps alot to stop the RLS AND if I get too warm, that'll bring it on too especially right after I get into bed for the night.

IF I don't drink an extra quart of water a day too FOR SURE I will have RLS that night, it NEVER fails. All these muscle spasms are brought on by dehydration, contraction and fatigue.

Since I don't like or want to be taking medications I try to figure out what I am doing to contribute to the problem.

Muscles are funny things. You don't treat them right and they REBEL!!!!

Ugh and eww...

Cheryl, you may to be checked out for myoclonus too, in case that is what you are experiencing. Different drugs are used to treat that, so a confirmed should be the first step:

http://en.wikipedia.org/wiki/Myoclonus

I'm going to PM you a link, that might help you with defining the differences between:

1. Motor Spasticity, vs
2. Sensory Spasticity, vs
3. Myoclonus

... as well as some potential options.

Cherie

Cheryl, I will join your club - I am working on 2+ months myself. I am taking the full dose of Baclofen and they are talking about adding something to go with it....

I am thinking of you!

Thanks everyone. Quinine is out...been there done that. Can't take Zanaflex or Baclofen, they don't work for me for the spasticity AT ALL.

I get massage therapy once a week, and b/c I am covered by TriCare, the massage therapy is not. I could probably go somewhere else, but I like my therapist and TriCare would probably send me to some PT center that I wouldn't like...so I am happy where I am and she gives me a good deal.

I am thinking that my B-12 is low again. Haven't had it checked in a while. I am back to once a month shots. I am going to call my PCP on Monday and get a blood draw to see if that's the problem.

I also switched from Sinemet for the spasticity to Soma because of the stomach problems the Sinemet was causing but it did do a good job on the spasticity. Soma doesn't seem to be doing such a good job. Maybe I need to just forego the stomach issues (I can sleep at least) and go back to the Sinemet.

One other thing that I think I maybe leaning towards is that if I do not test positive for the MRTCs at this next blood draw, I may just pull out of the clinical trial...I've technically not been on any meds for over 2 years to treat this MonSter and I am wondering if it is rearing its ugly head and I am heading into the 3 month exacerbation rotation again. Makes sense to me. Had one in December, one in April and this could be another one that I am gearing up for....

Those of you who have known me for a while know that my exacerbation rate was 3-4 a year before I entered this trial. Seems to me that I am back into that routine again.

I am hoping that I test positive this time so I can get on the vaccine for 2 years...

So, here's my plan....blood test for B-12. More water, glug glug glug, ask if I can switch back to Sinemet, which allows me to take rx sleeping pills prn, and see what happens at the appt on the 27th.

It will take approx 2 weeks to get the MRTC blood test results back.

Today I am so tired I can't even see straight, but it is a beautiful day out so I am going to go take pictures of my trees for a marketing brochure. Holly and I are going to walk around the field!

Anyone want to buy some trees?

Cherie can you post that link here? It does seem like a lot of us are experiencing an increase in spasticity lately. I am sure the heat and humidity has a lot to do with it. The NMSS has some great information on it as well as a brochure for exercises to help it.

Cheryl, Beth, Snoodles - I hope you all get some relief soon. Big hugs for you all.

Cheryl, so sorry for your misery.

Do you have your suspicions one way or the other on whether you're getting the actual drug? Sorry you're back to your old schedule of 3-4 flares a year. Ugh. Plus the respiratory carp.

But yes, I'd love some trees. Now if you could just hop in your plane and deliver them... I hope you will post pictures of your yard for us green-thumb challenged people to admire.

She can't post the link b/c it would be a guideline violation.

The myoclonus information is good information tho. I never thought about that...thanks Cherie.