Tremors....... What's prescribed?

[Guest guest]

Hi All..

Well, the bad news is..

I knew that I was starting an exacerbation Sunday night.. my toes on my right foot (just the three little ones) felt like they were curled under, and I couldn't straighten them.. [sort of like when you pull your sock too tight, then put your foot in a shoe that pulls the sock even tighter]... and complete exhaustion hit me as well..

I was kind of hoping that it would go away quickly, as it normally does, but it didn't.. the strange feeling in my toes continued.. I also noticed that my balance was way more off than it normally is... And of course the fatigue continued..

Today, I noticed.. my bangs fell over top of my glasses, and I could see them. I'm sitting there not moving, but my bangs are jumping all over the places.. not too violently, but enough to let me know they were definitely moving. So I looked in the mirror, and yup, sure enough my head is doing this faint little dance..

I called my neuro, only to get an answering machine telling me that they are at their Christmas Party!.. if it's an Emergency, go to the E.R., however if you happen to be on an HMO, call your PCP first.. Well, I don't consider this to be an emergency worth sitting in the ER for 5 hours before somebody does something about it.. so I called my PCP.. she's usually pretty good about things like this.. She's out of the office, but she does have a Physician's Assistant there.. and the PA will call me back.

Now, my question is.. Does anybody else in the group take anything for their tremors? And if so.. What?.. So that I have an idea what I should be looking to be getting in the way of a script from the doctor.. And in the meantime, what can I do about this horrible awful feeling that goes with the tremors.. I noticed it now in my arms and hands as well.. (I just thought it was fatigue there at first, but now that I know my head is bobbing slightly, I realize that what I'm feeling in my arms isn't just fatigue, it's tremors in them as well)...

Just what I needed.. more drugs.. lol well at least I hope they make me feel happy..

|)onna

[Guest guest]

Hi Donna,

Try Valerian Root. That is a herbal supplement, inexpensive. It is what they make Valium from. I have been taking it along with my other supplements for years. I really don't know if it helps or not but I do not have tremors. I originally started it because of stiffness and spasms.

I don't take any drugs other than LDN, I started that in July and so far so good. I had similar toe curling and the first day of LDN, my toes relaxed for the first time in years.

Regards,

Tom

[Guest guest]

Well Tom...

If the PA doesn't call me back by this evening, well even if she does call me back by this evening, I still think I'm going to head out and get some Valerian Root.. My x-sister-in-law suggested it once before.. for something else though if I remember correctly...

At this juncture though, I'm seriously beginning to doubt the effectiveness of my Avonex any longer. I'm not saying that it doesn't work, because I had proof (at the beginning of therapy) that Avonex was working for me.. In four months of therapy, with Avonex, 4 of my 7 lesions resolved themselves. I thought that was a pretty good batting average myself.

However, at this point in time, over 3 years into therapy, I'm beginning to wonder if I haven't developed the anti-bodies, and the Avonex isn't quite as effective as it was in the beginning. I had read, by some prominent neurologists who specialized in MS, that they were suggesting adding a 2nd therapy to the first to cover the bases. Now I did that reading probably well over a year ago, and I know that I suggested this to my neuro this past spring. He wanted to go with Novantrone, but I ruled that one out rather quickly when I check up on the side-effects and risks involved with it.

I think we're at a standstill, at this point, with the Avonex, and I'm still not opting for the Novantrone. I'm also not willing to spend 5 hours in the Emergency Room, and then who knows how much longer for them to get a bed ready for me upstairs (because they will admit me, and put me on IV steroids.. there's no doubt in my mind about that one... and I'm a stubborn wench who refuses to be hospitalized over Christmas.)

I'm going to try the Valerian Root and see if it helps.. I know I do NOT like the feeling of the tremor.. and I also know that my knowing that my head is doing the bobbing thing is going to make me very very self-conscience about it. I can deal with the staggering.. I don't think I can deal with involuntary movements though...

LOL.. I guess there was a reason I was procrastinating in finishing my Social Security Disability Forms after all. I've got a NEW symptom to add to the papers...

|)onna

Re: Tremors....... What's prescribed?

Hi Donna,

Try Valerian Root. That is a herbal supplement, inexpensive. It is what they make Valium from. I have been taking it along with my other supplements for years. I really don't know if it helps or not but I do not have tremors. I originally started it because of stiffness and spasms.

I don't take any drugs other than LDN, I started that in July and so far so good. I had similar toe curling and the first day of LDN, my toes relaxed for the first time in years.

Regards,

Tom

[Guest guest]

I have the toe curl too! It has been there for about 2 1/2 yrs. It never

goes completely away. Wow the LDN relaxed it huh? Amazing.

Ruth

-----Original Message-----From: tom bayuk Sent: Tuesday, December 16, 2003 2:45 PMTo: MSersLife Subject: Re: Tremors....... What's prescribed?

Hi Donna,

Try Valerian Root. That is a herbal supplement, inexpensive. It is what they make Valium from. I have been taking it along with my other supplements for years. I really don't know if it helps or not but I do not have tremors. I originally started it because of stiffness and spasms.

I don't take any drugs other than LDN, I started that in July and so far so good. I had similar toe curling and the first day of LDN, my toes relaxed for the first time in years.

Regards,

Tom

[Guest guest]

Donna,

Sorry about the flare up. I think these are timed to hit around

holidays. I'm having a bit of a flare up myself presently, relating

to vision and FATIGUE.

I have had the numb description you set forth perfectly. Didn't think

that was MS related. *sigh* I have a tendency to think it's NOT the

MS. Denial? Probably.

I know that Clonapin is on the list for tremors and having taken that

med before, it will probably work on tremors. I took it 6 years ago

after my mother unexpectedly passed. I was so anxious, I had nothing

but panic attack (as they were called) after panic attack. I was so

anxious at times, I couldn't breathe. I thought I was having a heart

attack. Clonapin is a Benzodiazipine, and therefore, you can become

physically and mentally dependent upon them. I was warned, but took

them anyway. Before I knew it, I was taking 4 a day, instead of one.

I was chasing that first initial feeling of calmness that came over

me. I had to go off them cold turkey and after a while, I was okay.

There are many other " calm dawn " meds available. They all have side

effects, but I believe none of us have to be martyrs. If there is a

med available to relief some of our discomfort, we owe it to our

quality of life to try it. I held off on taking meds for a year

following my Dx with MS, because I didn't wanted to become addicted

to anything. Maybe if I had started meds right when they wanted to

start me, my cognitive abilities may have been better today. Who

knows?

There are meds for the tremors and when you can get in touch with

your neuro, he will know exactly the ones for you to try. My neuro

believes meds for symptoms are a quality of life issue. We don't have

to suffer the symptoms if there are meds to try for them.

-- Jackie

> Hi All..

>

> Well, the bad news is..

>

> I knew that I was starting an exacerbation Sunday night.. my toes

on my right foot (just the three little ones) felt like they were

curled under, and I couldn't straighten them.. [sort of like when you

pull your sock too tight, then put your foot in a shoe that pulls the

sock even tighter]... and complete exhaustion hit me as well..

>

> I was kind of hoping that it would go away quickly, as it normally

does, but it didn't.. the strange feeling in my toes continued.. I

also noticed that my balance was way more off than it normally is...

And of course the fatigue continued..

>

> Today, I noticed.. my bangs fell over top of my glasses, and I

could see them. I'm sitting there not moving, but my bangs are

jumping all over the places.. not too violently, but enough to let me

know they were definitely moving. So I looked in the mirror, and yup,

sure enough my head is doing this faint little dance..

>

> I called my neuro, only to get an answering machine telling me that

they are at their Christmas Party!.. if it's an Emergency, go to the

E.R., however if you happen to be on an HMO, call your PCP first..

Well, I don't consider this to be an emergency worth sitting in the

ER for 5 hours before somebody does something about it.. so I called

my PCP.. she's usually pretty good about things like this.. She's out

of the office, but she does have a Physician's Assistant there.. and

the PA will call me back.

>

> Now, my question is.. Does anybody else in the group take anything

for their tremors? And if so.. What?.. So that I have an idea what I

should be looking to be getting in the way of a script from the

doctor.. And in the meantime, what can I do about this horrible awful

feeling that goes with the tremors.. I noticed it now in my arms and

hands as well.. (I just thought it was fatigue there at first, but

now that I know my head is bobbing slightly, I realize that what I'm

feeling in my arms isn't just fatigue, it's tremors in them as

well)...

>

> Just what I needed.. more drugs.. lol well at least I hope they

make me feel happy..

>

> |)onna

[Guest guest]

Jackie,

Thanks so much for your reply. I did find a list of drugs that are being

used for tremors, and Klonapin was one of them... Unfortunately, I did get a

hold of the neuro. I called them around 10 yesterday morning. The gal who

answered the phone told me she'd tell the doctor and they'd call us back.

After 3 yesterday afternoon, somebody finally called back!

By 10 yesterday morning, I was seeing spots in front of my eyes as well. So

I had explained to the gal, that I knew I was having a mild exacerbation,

but that the tremors bothered me. When she did finally call me back, she

tells me that the doc said that the Ditropan could be causing this. (I

looked it up in my pillbook, and nowhere does it mention tremors as a

side-effect, even under the least common side-effects). So I told her..

Well that would be understandable, but I haven't been taking the Ditropan

lately. I've been out of the script. She said, well let me get back to the

doctor with that one, and we'll call back again. About 15 minutes later the

doc himself calls me back, and proceeds to tell me that he doesn't think I'm

having an exacerbation, because exacerbations typically last longer than 3

days (I didn't bother to remind him that it only started on Sunday, and the

different things happening haven't stopped since, though they have changed..

and the spots eased up enough that I wasn't about to go nuts). He said he

wasn't going to prescribe anything for the tremors, but that he wanted me to

discontinue using Ditropan for a while..

Duh... I didn't bother to argue the point with him, being as I'd already

told the gal who called that I haven't been taking the stuff to begin with,

so it's NOT causing these things.. I just looked at when I got off the

phone with the doc, and said.. " It's time to find another neuro " .. I don't

call the neuro for every little thing that happens to me with the MonSter, I

figure it's all in a day.. but I feel that when I do figure that it's

serious enough to call him, I should have some attention paid to what's

going on.. Of course this is the guy who filled out some paperwork, that I

was only Temporairly Disabled.. and he even put dates on it.. October 29th

through March 3rd.. LOL.. Such a putz!

Thanks again

|)onna

Re: Tremors....... What's prescribed?

> Donna,

>

> Sorry about the flare up. I think these are timed to hit around

> holidays. I'm having a bit of a flare up myself presently, relating

> to vision and FATIGUE.

>

> I have had the numb description you set forth perfectly. Didn't think

> that was MS related. *sigh* I have a tendency to think it's NOT the

> MS. Denial? Probably.

>

> I know that Clonapin is on the list for tremors and having taken that

> med before, it will probably work on tremors. I took it 6 years ago

> after my mother unexpectedly passed. I was so anxious, I had nothing

> but panic attack (as they were called) after panic attack. I was so

> anxious at times, I couldn't breathe. I thought I was having a heart

> attack. Clonapin is a Benzodiazipine, and therefore, you can become

> physically and mentally dependent upon them. I was warned, but took

> them anyway. Before I knew it, I was taking 4 a day, instead of one.

> I was chasing that first initial feeling of calmness that came over

> me. I had to go off them cold turkey and after a while, I was okay.

>

> There are many other " calm dawn " meds available. They all have side

> effects, but I believe none of us have to be martyrs. If there is a

> med available to relief some of our discomfort, we owe it to our

> quality of life to try it. I held off on taking meds for a year

> following my Dx with MS, because I didn't wanted to become addicted

> to anything. Maybe if I had started meds right when they wanted to

> start me, my cognitive abilities may have been better today. Who

> knows?

>

> There are meds for the tremors and when you can get in touch with

> your neuro, he will know exactly the ones for you to try. My neuro

> believes meds for symptoms are a quality of life issue. We don't have

> to suffer the symptoms if there are meds to try for them.

>

> -- Jackie

>

>

> > Hi All..

> >

> > Well, the bad news is..

> >

> > I knew that I was starting an exacerbation Sunday night.. my toes

> on my right foot (just the three little ones) felt like they were

> curled under, and I couldn't straighten them.. [sort of like when you

> pull your sock too tight, then put your foot in a shoe that pulls the

> sock even tighter]... and complete exhaustion hit me as well..

> >

> > I was kind of hoping that it would go away quickly, as it normally

> does, but it didn't.. the strange feeling in my toes continued.. I

> also noticed that my balance was way more off than it normally is...

> And of course the fatigue continued..

> >

> > Today, I noticed.. my bangs fell over top of my glasses, and I

> could see them. I'm sitting there not moving, but my bangs are

> jumping all over the places.. not too violently, but enough to let me

> know they were definitely moving. So I looked in the mirror, and yup,

> sure enough my head is doing this faint little dance..

> >

> > I called my neuro, only to get an answering machine telling me that

> they are at their Christmas Party!.. if it's an Emergency, go to the

> E.R., however if you happen to be on an HMO, call your PCP first..

> Well, I don't consider this to be an emergency worth sitting in the

> ER for 5 hours before somebody does something about it.. so I called

> my PCP.. she's usually pretty good about things like this.. She's out

> of the office, but she does have a Physician's Assistant there.. and

> the PA will call me back.

> >

> > Now, my question is.. Does anybody else in the group take anything

> for their tremors? And if so.. What?.. So that I have an idea what I

> should be looking to be getting in the way of a script from the

> doctor.. And in the meantime, what can I do about this horrible awful

> feeling that goes with the tremors.. I noticed it now in my arms and

> hands as well.. (I just thought it was fatigue there at first, but

> now that I know my head is bobbing slightly, I realize that what I'm

> feeling in my arms isn't just fatigue, it's tremors in them as

> well)...

> >

> > Just what I needed.. more drugs.. lol well at least I hope they

> make me feel happy..

> >

> > |)onna

>

>

>