[tovaxin_lab_rat]

Another thread about the dreaded spasms and spasticity and I can't sleep. It's 3 something in the morning and I've had about 2 hours of sleep. My legs are killing me and this has been ongoing for about 3 months, maybe a little longer.

I am in a clinical trial so can't just willy nilly change my meds without a hassle with the neuro in charge of the trial. I've asked for a change in meds and am not happy with the lag in response time, the confusion in the office with the new coordinator and frankly the whole issue.

I guess I should back track a little here. I asked for Lyrica for the neuropathic pain and the response was non-responsive. So I am not sure I can take it. So, I am not. Right now the pain is not neuropathic so it's a moot point. I will address that issue next week.

The pain is a combination of spasms and spasticity and I have been asking if the klonopin can be upped. I've been asking for over 2 weeks with no response. Today I finally get a response and it makes no sense but I increased the klonopin from 1 mg to 1.5 mg. I was hoping that it would make a difference right away, but it didn't. I also take Soma. No relief. None.

I know that part of the problem is most likely due to the fact that I have been sick with another cold for the past couple of weeks which makes my symptoms go whacky so I need to just relax and let my system settle down. But, this has been going on since my last exacerbation in April. I got no relief from the IVSM.

I guess it's one of the trials and tribulations of being in a clinical trial and not knowing if you are in the placebo group or not. Right now I am in "limbo" basically between the double blind study and waiting to find out if will be accepted into the extension study for the real drug. I should know by Mid July.

Sounds like it's the week for spasm/spasticity problems. Maybe we should start a club!

[Kitty]

Can you take baclofen? I take a combination of Baclofen and Neurontin. It doesn't always take away all of the pain but it usually makes it manageable. Since you're in the trial I wasn't sure what is allowed and what isn't.

I had a period of time where my legs would give me fits but only at night. It'd start up about 8 PM and last nearly all night long. It's so annoying and coupled with lack of sleep it can make all the other symptoms seem magnified.

I hope they respond to your questions - two weeks with no response is unacceptable!!

[Friend2U]

for the pain you are in and the lack of sleep. That is just no fun at all.
Hope you get some relief soon.

[tovaxin_lab_rat]

I cannot take Baclofen nor Zanaflex. That's why I am taking Soma in addition to the Klonopin. I also take pain meds, either vidodin or norco depending on how bad the pain gets.

I talked to my neuro about adding lyrica when it becomes neuropathic pain, but that's not the problem right now. It's just spasticity. It's just getting worse.

I suppose it will take a few days for the new dose of Klonopin to kick in.

[sassy]

Since meds are difficult to get approved how about massages? PT?

There's an article in Neurology Now this month about massage helping MS patients. According to the article tho you need to go to an expert so you get the correct type of massage.

I feel for you because I have been there and still suffer but not as much as before. And I certainly hope this isn't contagious via the internet because like you said seems to be the season for spasms around here.

[tovaxin_lab_rat]

Originally Posted by sassy

Since meds are difficult to get approved how about massages? PT?

There's an article in Neurology Now this month about massage helping MS patients. According to the article tho you need to go to an expert so you get the correct type of massage.

I feel for you because I have been there and still suffer but not as much as before. And I certainly hope this isn't contagious via the internet because like you said seems to be the season for spasms around here.

Sassy, I get a deep tissue massage every week. And she is a certified massage therapist and has been working on me for 4 years.

I think it's b/c I have been suffering from this horrible cold crap for the past 2-3 weeks.

[starfish]

Sorry you are limited by the study and not getting a faster response. It is so hard to function when you do not get enough sleep, and especialy sleep that is constantly interupted.

There is something called a medical massage that some insurance companies will cover. You have to go to a PT that offers it and get a PT evaluation before you start. The PT I went to had a massage therapist.

You will need a prescription from your doctor to get started. When I did this I noticed it helped my feet for a few days. I have been on zanaflex at night for almost 2 years. I can't take it while I am working.

So sorry for what you are going through, I hope you find a resolution soon.

[Wiix]

Originally Posted by Av8rgirl

Another thread about the dreaded spasms and spasticity and I can't sleep. It's 3 something in the morning and I've had about 2 hours of sleep. My legs are killing me and this has been ongoing for about 3 months, maybe a little longer.

I am in a clinical trial so can't just willy nilly change my meds without a hassle with the neuro in charge of the trial. I've asked for a change in meds and am not happy with the lag in response time, the confusion in the office with the new coordinator and frankly the whole issue.

I guess I should back track a little here. I asked for Lyrica for the neuropathic pain and the response was non-responsive. So I am not sure I can take it. So, I am not. Right now the pain is not neuropathic so it's a moot point. I will address that issue next week.

The pain is a combination of spasms and spasticity and I have been asking if the klonopin can be upped. I've been asking for over 2 weeks with no response. Today I finally get a response and it makes no sense but I increased the klonopin from 1 mg to 1.5 mg. I was hoping that it would make a difference right away, but it didn't. I also take Soma. No relief. None.

I know that part of the problem is most likely due to the fact that I have been sick with another cold for the past couple of weeks which makes my symptoms go whacky so I need to just relax and let my system settle down. But, this has been going on since my last exacerbation in April. I got no relief from the IVSM.

I guess it's one of the trials and tribulations of being in a clinical trial and not knowing if you are in the placebo group or not. Right now I am in "limbo" basically between the double blind study and waiting to find out if will be accepted into the extension study for the real drug. I should know by Mid July.

Sounds like it's the week for spasm/spasticity problems. Maybe we should start a club!

OK then, Av8rgirl. Next time you are having this problem, do this. Check your skin turgor. IF you are dehydrated THAT could be contributing to your muscle spasms.

IF this is what it looks like on YOUR hand, you ARE dehydrated. You NEED to drink more water, DAILY. Then you won't need all this medication. I drink an extra QUART a day. Sometimes it's difficult to choke down but it's worth it.

[Jappy]

Cheryl I am so sorry that you are going through this. All this
testing that you are doing for us msers is great. But, if it is going
to hurt you then you better have a good talk with yourself.

You have to come first.

I take Tramadol for pain. Remember when I was in a lot of pain
last month. I was given other meds. but had reactions to them.
dr. increased the dose of the Tramadol. It helps but, does not take it
all away. At night I take Lorazepam before bed. Can't take them together
have to be at least 3-4 hrs. between.

With your body fighting this cold it is probably getting weaker and
everything else is hitting you harder.

I hope and pray that you will find the answers to what you should
do and they give you something to help you not suffer so much.

Jappy

[tovaxin_lab_rat]

Originally Posted by Joyce

Cheryl I am so sorry that you are going through this. All this
testing that you are doing for us msers is great. But, if it is going
to hurt you then you better have a good talk with yourself.

You have to come first.

I take Tramadol for pain. Remember when I was in a lot of pain
last month. I was given other meds. but had reactions to them.
dr. increased the dose of the Tramadol. It helps but, does not take it
all away. At night I take Lorazepam before bed. Can't take them together
have to be at least 3-4 hrs. between.

With your body fighting this cold it is probably getting weaker and
everything else is hitting you harder.

I hope and pray that you will find the answers to what you should
do and they give you something to help you not suffer so much.

Jappy

I ended up taking two vicodin yesterday, of course not at the same time, but I did get some sleep... feeling a bit better today, but we shall see how it goes tonight. I feel like Frankenstein walking!!

Wiix, I am getting enough water...that's doesn't seem to be the problem...I feel like I am floating away! Good visual! I am sure it will help a lot of others, too!

How are you Beth and Snoodles?