Her Royal Highness!!!

I promise no wallpapering! I can't climb on the ladder anyway! :(

But she's so much FUN when she wallpapers. (And maybe she can't climb ladders but we knew THAT! :D )

i hope the med helps.
what about the bruising?
it may be a little late on the advice but try icing it.

Doc has me wrapping my leg is warm moist towels and keeping it elevated. Feels better.

We shall see what my neuro says tomorrow morning.

Ah, thank you FG!

But, what do you call a royal whiner?:(

Cheryl, please let us know what the neuro says today. :hug:

I just got home from seeing my neuro. After a thorough neuro examination she wants to start me on 3 days IVSM. She also wants to add quinine to help with the spasms. It has worked for me in the past before it was pulled from the market. There's a new formulation on the market now and you have to watch the platelet count, but evidently its a safer form.

Of course, that has to be cleared by you-know-who. She is going to call him and have a chat with him not only about the IVSM, but adding quinine as well as asking him about my MRIs. If he won't share, then she is going to ask him if she can order one anyway.

The fun begins. :rolleyes: I may be out of the study. At this point, the decision is do I treat this relapse and stay in the study, treat the relapse and get kicked. Treat the relapse and get information or what...I want to stay in the study, get treated, and get information. So, let's see what happens. She said she would call him today and let me know and if I don't hear back from her in 2 days, to call her back...she's on call for the rest of the week.

This being caught in the middle stuff sucks. :(

Ignore them....:D

Thanks for the update Cheryl. I hope it gets approved for you!

I will keep you posted. Not sure I want steroids. We shall see how things go over the next couple of days.

But, neuro exam did not go well. No balance, could not walk on toes or heels. Could not feel the tuning fork on big toes. No reflexes in knees, heels, arms. Fingers and palms of hands are now numb. And of course, there's this right leg issue...tight as a board. Walking is fun! NOT...

Hmmm....I am thinking I have MS right now! :rolleyes:

I am sorry the appointment didn't go well. That just plain sucks. I hate when they test and probe and then look and say things aren't better. :rolleyes:

Jim's problem is in his right leg too. His left leg was the problem child and now the right wants to get in the action. :mad:

Let's pray it's just from all you've been doing and it's a temporary situation. :hug:

I love my neuro here. The appt went very well...as I suspected. I have been feeling icky for about 2-3 weeks. The leg spasm thing was just the icing on the cake, so to speak.

It's the clinical trial doc that I have a hard time dealing with. He is 450 miles away and I can't just hope on over there at a moment's notice for an appt.

Ouch calf cramps! I get wicked cramps (spazams) in my left leg (bad one) only. They kill. I've been taking extra calcium, eating more bannanas, making smoothies ( yougurt, fruit, OJ and ice ) and drinking tonic water (quinine).

All that doesn't stop them. When I get one , mostly when I'm sleeping, I have to get up and stretch and bend and I can loosen it up bit it, usually feels like its still there.

I have some flexeral that I use when my neck or lower back freaks out and come to think of it when I use it = less cramps. The problem with that is that it seems if I use it to often it isn't as effective with the neck and back thing.

So lately I've been trying to stretch out a couple times a day. It seems to help some. I can usually tell when cramps are coming because my foot twitches.

Smoking a couple of puffs of MJ works sometimes but not consistantly but it does stop the foot twitching.

Why do we have to deal with all this crap?

I have been trying to walk them off, but they have been so bad lately that I can't put any weight on my leg. Only makes it worse :mad:

Been doing some stretching during the day and I get weekly deep tissue massages to help with the atrophy in my calf/thigh muscles. ;)

I drink milk, 2 -3 yogurts a day, lots of calcium, potassium citrate, and my banana, so that's not an issue.

Allergic to mj. Yep.

Can't drink anything carbonated. :(

Thanks for the suggestions. :D

The cramps/spasms seem to increase when I am headed for/having a relapse. Seem to be about the only time they are really a problem. Otherwise, they are manageable...??? whatever that is. The meds keep them tolerable...:)

PS..welcome to NT! :hug:

that is just the pits cheryl.
i'm sorry you're having so much trouble.

how long have you been in this study?
do you think it's helping.
is it double blind? or do you know what you're getting?
i'm curious to know why you want to stay in it.

do you think the steroids will help?
thanks for keeping us updated.
i'm glad your neuro is being proactive and listening to you.

I just saw this thread...
 

That drug trial? I'd get in touch with the doctor even if it is by phone or email.

Some drugs deplete magnesium big time. And who knows if this new drug you are on does that? Getting a bruise like this is not common, and also rather scary--- that platelets might be affected. So you need to contact that doctor running your
trial and report this. Others may be reporting it and he might be able to help you with it.

If an artery or arteriole becomes blocked (spasm of the wall or clot), it will back up the venous return in that area, slow down the blood flow and the blood may clot and break a vein. But this is not common.

Magnesium improves blood flow, and relaxes the smooth muscle of the arteries. I am sure you know I have a magnesium thread in Vitamin forum.
It will not do much for your numbness, however, or other issues, but it may help with your spasms.

I have reported it to my clinical trial doc, spent most of yesterday on the phone with them.

Check out the drug I am on...it's a vaccine made from my own blood...www.opexatherapeutics.com/tovaxin.php

I got nothing but hugs here for ya, FG.:hug:

I hope you get some relief soon! Relapse sucks.

(btw?...no brownies for you!):D

Hope you are feeling better...I was doing oh so well for the past three days...no cramps at all, today...they're baaaccckkk.

I've had them for almost two years everyday...and usually wind up in the ER when they get really severe and I can't take the pain any longer. Walking when you are having them is not good...it makes them get worse. I haven't found a whole lot that helps and can't find anything that has caused them.

We have changed meds, I don't have clots...three ER docs say its the MS...they don't even argue the point they just give me relief.

This is the only thing I can do after taking my meds.
20mg vicodin
30mg baclofen
1200 mg neurotin
1mg requip

Fill bath starting with really warm water...add not less than 2lbs of salts...turn off cold water and let hot water run slowly...when it gets as hot as you can stand turn it off. I have actually slept in a hot bath until it cools and then start over again.

I feel for you honey and I hope you are feeling better...I swear I think I would try weed if I wasn't allergic to it!! lol

Thanks for the tips...

Vicodin doesn't do anything for me!! I've moved up to Norco!
Baclofen and Requip are two drugs I cannot take and right now the clinical trial doc has said no to Neurontin and Lyrica. Cannot take Zanaflex either.

We've upped the dose of Klonopin and moist WARM towels seem to be working. HOT showers or baths set off symptoms for me as I have Uhtoff's Syndrome so no not baths for me!!!

As I said earlier, I am a challenge!!! When I find something that works, I like to stay with it. That's why I love my neuro! She works with ME...:heartthrob:

The massage today seemed to help...let's see how I do thru the night tonight. :)

Don't know why they are so bad right now but I am sure it's because I am in the beginning of a relapse...only explanation that seems reasonable to me. Everything is out of whack. :(