Muscle twitching

[Guest guest]

Hi

This muscle twitching sure sounds related to akathesia! Since phenergan, and

methotrexate and akathesia, there are many drugs now I won't use including

compazine, phenergan, MTX, and cold meds.....I still take medication to control

akathesia!

Beware of any medication that causes these symptoms, i.e.: Parkinson's or

Akathesia

Thanks

Love Joanne

[Guest guest]

>

> I am having so much muscle twitching when I take LDN. It is just little

> jerks in miscelaneous parts of my body-even on my face sometimes. It is

> unpredictable when it happens. Today I started to get scared.

>

> Does anybody have any idea why LDN causes twitching for me?

>

> Could I be harming myself by taking it? Should I continue?

>

> LDN has helped me a lot. I have fibromyalgia and some other disease

> that the Drs. still can't diagnose that would make sense.

>

=========

LDN may be helping some of the signals in the nerves to get through...we call

this an awakening. Many who started LDN had this happen during the first 3

months on LDN.

[Guest guest]

I had that muscle twitching too and it freaked me out at first...but it

went away so just give it time...nothing to fear.

[Guest guest]

You didn't supply your name, so...

My first question is: how much LDN are you taking and is it for MS? If

you're taking 4.5 mg, I'd cut down to 3 mg. Sometimes it takes the body a

while to adjust to the increased endorphin production. If you look at the

LDN website (www.ldninfo.org) it says you can go down to 1.75 mg. Below

that, Dr. Bihari does not believe it has any effect.

[Guest guest]

Bren,

Thank you for your reply. I have a call into my neurolgist to see what

type Lyme blood test he gave me. I also was tested for it when I had my

spinal tap. I looked at the spinal tap report and it doesn't say what

the name of the test was. It says it checked for Lyme DNA, and it was

negative. But, it also says on the report " if clinical features of

illness are highly indicative of Lyme neuroborreliosis additional

testing on CSF would be appropriate. It really ticks me off that

furthur testing was not done. I had a mean and unkind * & %$#@ for a

neurologist then and I don't think she even believed me. (I have

switched to a better neurologist now).

I just wish I could know what " it " is so I could know what to expect.

K

[Guest guest]

Bren,

I forgot to add something that is interesting towards the possible

Lyme. Six months or so into this illness I found a site called " Road

Back Foundation. " It advocates taking antibiotics for rheumatic

dieseases. I started erythromycin instead of doxy or minocycline they

advocate since I was nursing. Within 1 week my toe that had been numb

for about six months was not numb anymore. I continued with the med,

and the numbness still has not come back, but my other symptoms have

increased. Recently, I ordered minocycline from Mexico (my Dr would

not allow me to switch). I cut the pill into quarters becuase every

time I took it (every other day), even with that low dose, I felt

horrible. My back muscles would hurt so bad! I decided to quit because

the pain changed my personality and I was a grouchy wife and

mom. " They " say that this is a Herxheimer reaction. I think it might

help me to take it, but I honestly don't think I could take care of my

22 montn baby and keep my part time job in that pain. I am thinking now

of ordering Doxy to se if its any easier.

Sorry, my posts have been long.

[Guest guest]

>

> Bren,

>

> I forgot to add something that is interesting towards the possible

> Lyme. Six months or so into this illness I found a site called " Road

> Back Foundation. " It advocates taking antibiotics for rheumatic

> dieseases. I started erythromycin instead of doxy or minocycline they

> advocate since I was nursing. Within 1 week my toe that had been numb

> for about six months was not numb anymore. I continued with the med,

> and the numbness still has not come back, but my other symptoms have

> increased. Recently, I ordered minocycline from Mexico (my Dr would

> not allow me to switch). I cut the pill into quarters becuase every

> time I took it (every other day), even with that low dose, I felt

> horrible. My back muscles would hurt so bad! I decided to quit because

> the pain changed my personality and I was a grouchy wife and

> mom. " They " say that this is a Herxheimer reaction. I think it might

> help me to take it, but I honestly don't think I could take care of my

> 22 montn baby and keep my part time job in that pain. I am thinking now

> of ordering Doxy to se if its any easier.

>

> Sorry, my posts have been long.

>

======

You may want to try a holistic approach. My alternative medicine doc is

familiar with Ledum treatment...I just don't know anyone personally that has

used this treatment.

Ledum treatment for Lyme

http://cassia.org/ledum.htm

[Guest guest]

Oh yes . I get this big time. All over my body. Legs, arms, chest. The

best thing is watching my finger move sometime by it self. Not often, but it

does happen. Right now as I type it is going in my forearm. Never a dull

moment with CMT. :-) LOL.

Matt

Ontario Canada.

muscle twitching

I am going to the neuro in a few weeks, but I thought I would run this by

you guys too while I wait for my appointment date. I have muscle twitching that

is persistent. We are talking on and off for a month but pretty much every day.

It freaks me out because I have read things about ALS and MS. The twitches start

in my shoulderblade area (both sides) and then sometimes travel down my arms.

Has anyone else experienced this. And then my related arm starts to ache. I am

just wondering if it is somehow related to my CMT. It is neuromuscular in nature

but the location seems all wrong.

[Guest guest]

I have pectoral spasms in my chest. Sometimes just minor twitching, other

times major jolts. It was worse while I was taking Cymbalta, and

increasingly large doses of CoQ10 really helped control them. After quitting

cymbalta, I don't notice much effect with or without the CoQ10, so I don't

take it.

Sharp stabs of foot pain spark a twitch in my chest. I told this to my

neurologist, and when he did an EMG, impulses in my leg caused my chest to

spasm. This did not occur during the hands/arm testing. I find I twitch more

when I'm tired, or stressed, or both. He told me they can control the

twitching with drugs, but they'll make me a zombie, so I should tolerate

them for as long as I can.

I had a Reiki (Japanese massage) session, and twitched out of control for

almost a half hour afterward. The practitioner wanted to do more sessions,

but I didn't want to go through the twitching again and cancelled the next

appointment.

O

[Guest guest]

,

Here is some info on muscle twitching, or more commonly known as fasculations.

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

Gretchen

[Guest guest]

Muscle twitching in my left shoulder blade area....have had it for over 10 years

now - intermittent, used to have it every day but now comes and goes (am 74 yrs

old with CMTB1). Does not travel down my arms and only in left shoulderblade

area. On rare occasions my muscle in my left thigh starts twitching, usually at

night when in bed. Sometimes while twitching in shoulderblade area it feels

like something crawling under my skin. Dr. said it was nothing to worry about.

??? But it is bothersome. I was tested for MS before diagnosed with CMTB1

- results were negative.

June

________________________________

From: cathy.power <slumpville@...>

Sent: Saturday, September 12, 2009 11:07:18 PM

Subject: muscle twitching

I am going to the neuro in a few weeks, but I thought I would run this by you

guys too while I wait for my appointment date. I have muscle twitching that is

persistent. We are talking on and off for a month but pretty much every day. It

freaks me out because I have read things about ALS and MS. The twitches start in

my shoulderblade area (both sides) and then sometimes travel down my arms. Has

anyone else experienced this. And then my related arm starts to ache. I am just

wondering if it is somehow related to my CMT. It is neuromuscular in nature but

the location seems all wrong.

[Guest guest]

Jeanne,

I actually have CMT 2A2.

[Guest guest]

I too get muscle twitching. Sometimes in my outer quad muscle, but mostly in my

arms and hands. Between my thumb and forefinger, lots of twitching. Sometimes I

think it is where I am getting weakest that I get the twitches. Just something I

have lived with and never thought about! I know my neuro and PT asked me if get

muscle fascillations, so it must be common to get with CMT.

Jackie

[Guest guest]

Absolutely, . When I was little my sister and I used to call them a

" pulse " , as in I have a pulse in my eye or in my arm, etc. I think it is a

hallmark of CMT and other neuromuscular disorders. I was told once in med school

that it was a sign that a nerve was dying and that it meant that the associated

muscle would soon atrophy. There is probably some of that, but I think it is

kind of like getting staticky reception on the radio. The muscle is getting poor

reception from the nerve that services it and responds in a chaotic way. I think

that it doesn't always, necessarily, mean the nerve is dying -- at least not in

the short term. Also it can indicate that you are missing key nutrients that

regulate muscle contractions, like zinc, magnesium, calcium, or just water. I

have been experiencing something between a fasciculation and a muscle cramp in

my feet lately. I think it is really a cramp but my foot muscles have atrophied

to the point where it is an ineffective cramp. Tonic water with quinine in it

can be helpful for cramps.

Hope that helps, Holli.

[Guest guest]

I have a constant lightning storm of fasciculations in my arms and legs.  I can

just sit and watch the many muscles in my arms and legs twitch and " pulse " under

my skin. It is not painful and barely felt, but is constant.

Bob Machotka

Verona, WI

[Guest guest]

No no no quinine Vinegar or pickle juice works wonders

K

[Guest guest]

Hi Holli,

I get muscle twitches all the time. I do not think muscle twitching is a sign

that the nerve is dying.

I have never heard this mentioned to me before but I will certainly ask the

research physiotherapists I work with (I am a participant in the National

Hospital of Neurology CMT studies) if they have heard such a thing or if it

makes physiological sense.

The last time I asked them a question about muscle overwork leading to wasting,

they said that the original study by P Vinci has been redone (most recently

being done by M Shy and team in the US) and they said that the danger of drawing

conclusions from single studies or observations based on non-controlled

assumptions is that conclusion on how to act / what to do may lead to more harm

than good. They stated this in reference to my concerns about my push to have

high levels of physical activity even though I have CMT.

I think that as long as a person can get good medical support, scary ideas such

as muscle waste or nerve death should not stop folks from being active or

avoiding activities that cause twitching or otherwise. But that is just my own

opinion, and I have great medical support.

For info, I found it interesting that when I had biofeedback performed on my

nerves - where you can hear the nerve transmissions - my nerves never went

" silent " between contractions. This seems to prove your point that with CMT

nerves kind of generate static noise. This to me is more likely the cause of my

muscle twitching. And perhaps it is exacerbated when I have been more active

(thus the nerve transmitting more, and then taking more time to quiet down after

activity).

I will report back on the " nerve death muscle twitch theory " next week post my

physio visit.

Best wishes from London,

Donna

http://blog.myfitnessyear.com

[Guest guest]

For me the twitching in my calf muscles was the first symptom. Followed by

cramps.

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[Guest guest]

Yes, there are multiple reasons for tics, fasiculations, etc. But I concur with

the nerve death/muscle atrophy thinking.

Earlier in my disease progression, it was interesting to sit in a chair and

watch multiple fasiculations travel in my leg muscles. At this time, I still

had good lower extremity activity and overall balance.

It brought to mind what a surgeon told me long ago: a medical person would say

" ... how very interesting ... " whereas the lay person would say " ... I'm sorry

this is happening to you. " As I watched the fasiculations, I was torn between

the two concepts.

Holli wrote:

> (snip) I was told once in med school that it was a sign that a nerve was dying

and that it meant that the associated muscle would soon atrophy. There is

probably some of that, but I think it is kind of like getting staticky reception

on the radio. (snip)

[Guest guest]

I have CMT and have experienced twitching in my fingers and calves. I am

responding to let you know that sometimes medications can cause this. My doctor

discovered that the Abilify I was on was causing it. (It's called tardive

dyskinesia) When he took me off the medication, the twitching stopped. Don't

know about shoulderblades and pain though.

Gigi