Re: twitches

[Guest guest]

Twitches are not unusual with LD. Many people have them

in varying degrees. They are mentioned in Bleiweiss's

article on LD. http://cassia.jerseycape.NET/essay.htm

Sue H

[Guest guest]

Hi Everybody,

I started IV Doxy 2 days ago. I can't get through 4-5 hours without

more pain med--all neuritic because pain level is 1,000 out of 10 on the

scale. I stare at the ceiling in bed because I feel better in that

position. Besides, I am in " The Twilight Zone " so can't do anything

anyway. Maybe I'll see some of you there! All this pain escalated BEFORE

starting IV meds. Can't wait for the Herx!!! You people are the best. My

link to the " real world " . My LLMD told me to take 400-800-- mg

Mag-Ox/daily for those " jumping limbs and weird twitches " . He said to

take it with calcium to help it work better. I have had magnesium

injections before. I wasn't even this bad but bad and after a bit

(within a week) there was an improvement. Also, he said I may need IV

magnesium. I'll let you know about that. If your reflexes are " brisk "

meaning your leg reacts VERY quickly and forcefully (or arm) when they

tap your reflex points, it means your magnesium is low. We all " know "

anyway with spasms, twitching etc. I have had an Rx for PT for a long

time in my wallet. I know I should go but feel so sick and need a ride

each time. Do any of your PT people " get it? " I mean, do they understand

Lyme at all? I went to PT 2 years ago following my TMJ arthroscopy and

they concentrated on my jaw but did do some work elsewhere. Since that

surgery was unnecessary and I was sent without DrB's Rehab guidlines

which I have a hold of now, maybe I should give it a shot? A therapist

who was one of the best this place had, evaluated me last Feb just

before I went on IV Vanco. It was NOT the right time to be re-evaluated.

I was nauseous, so foggy that I walked into the wall and cut my head.

She said to me, " Oh yes, (she remembered me from my post TMJ PT) you

were the " NONCOMPLIENT ONE " . I cried. Now I know that she just didn't

get the whole complicated picture. Yes, I used to cancel at times

because I COULD NOT LIFT MY HEAD and had aeseptic meningitis episodes. I

want to go back there since it is the closest but think a fresh start

elsewhere may be better----WHEN I can stop being nauseous. Throwing up

on a poor PT wouldn't be good. OK, just to let you people know. On

Sunday, I cried all day. I felt HOPELESS. I know I am very sick and

helpless but I forced myself to remember that I have some wonderful

things to be very grateful for. #1---A GREAT and CARING husband. Even

though he is out of work and looks for work every day, all day, he still

supports me. Also, he feels pretty well now even though he too has Lyme.

#2---2 girls with Lyme who seem to be OK for today. #3---A great LLMD

since April of this year. #4---A lifesaving neurologist/pain specialist

who gets it. #5---Our prescription plan is covering lots of this IV

stuff since our insurance co won't pay. #6 Strength from somewhere-just

enough to prevent me from jumping out of the window (God). #7--A " FEW

GOOD MEN " or women who are real friends, just a FEW but that is all you

need. #8--All of you. Thank you, thank-you, thank-you. PLEASE, write to

me with your worries and I will answer. It makes me feel better to help

you. I don't know " it all " but am an RN, support leader and have 10

years experience dealing with LD in our family and worked for a LLMD for

2 years. At least it helps me make sense of why all this is happening to

our family IF I can help others. Make me feel needed. I am a nurterer. I

love you all. Hang in there.

Your friend,

Helen

[Guest guest]

Dear Helen: You poor dear! I am getting off my IV Rocephin today and

they are putting me on Amantadine, which is an antiviral medicine. I

will pray for you, and hope that your herxing is mild.

Lovette

[Guest guest]

Hi Lovette, Just wanted to know what medicine they are using in combination

with the amantadine. Macrolides and azalides are suppose to be really good

with amantadine or plaquinel. Feel better -Val

[Guest guest]

hi everyone:

i'm just back to reading these e-mails again, as i was out of town for

several weeks.

my twitches drive me crazy - some times they can't be seen; but they are

felt and some times i can see them. some times i try to forget about

them and other times it is impossible to ignore them.

it really plays on your mind, but i've had a lot of support from people

who reply to these e-mails that have reassured me. even so, it is great

to see the support all of you offer to eachother because it helps me get

a much better night sleep each night.

thanks to all of you for all of your wonderful input and support!!

kathie

[Guest guest]

ValP74@... wrote:

>

> From: ValP74@...

>

> Hi Lovette, Just wanted to know what medicine they are using in combination

> with the amantadine. Macrolides and azalides are suppose to be really good

> with amantadine or plaquinel. Feel better -Val

>

>Dear Val: They weren't going to use anything with it! So, yesterday I made a

decision. I went off Rocephin IV after 6 weeks of treatment, and my 2

specialists are giving differing opinions to my GP, who is the gatekeeper for my

HMO care. My ID doc thinks I no longer have an active infection - I'm having an

allergic, inflammatory reaction to the former disease. This would require

putting me on prednisone for 2 weeks. The neurologist put me on amantadine to

help with fatigue, and wants to clear out my system of antibiotics so she can do

an Igenex test.

So, I told the warring camps that I was going off all medication for 2

weeks! No antivirals, no prednisone - I'm going to place myself at

risk for 2 weeks, hopefully to prove something to the medical

community. If I get better, great! Then I don't need them anymore. If

I get worse and spike a fever, then I assume there is an ongoing

infection which requires an antibiotic. If I stay the same, then I am

willing to think about an anti-inflammatory. It's like playing Russian

roulette with my health, but I am extremely frustrated at this point.

Plus, with as long as all of those on this board have been on treatment,

I don't know that medical science is on the right track anyway...

Lovette

[Guest guest]

Lovette, I know it is real frustrating to deal with this, but I also know a

lot of people who have been cured. Some after a few months,some a year and one

girl 5 years. It is possible to cure this yet it is very difficult. I thought

I was cured twice only to relapse a year later. If you do not feel like most

of your symptoms have started clearing up with the Rocephin, I personally

think this means you still have active infection and should continue with

antibiotic treatment. I don't know how you feel but I do know that once

antibiotics start working I notice a huge difference. Maby you should ask if

you could try amantadine with a macrolide or azalide antibiotic (Zithromaz or

Erythromycin sterate) These medicines work very well with a lysomotrophic

agent like Plaquinel or Amantadine. Try and Feel better. Keep your head up!!!

Hope your tests go well -Val

[Guest guest]

Dear Friends: As you know, I am at a crossroads in my medical

treatment, with 2 schools of competing thought vying for recognition.

As such, I declared a 2 week hiatus - drug free for 2 weeks!

The most amazing thing happened over the weekend. Two of my

friends from Seminary came to visit me, and laid hands on me to heal me.

While I did not feel anything at that particular time, when they left I

had an epiphany. I realized that this was my time to walk on the water

out to Christ. That I was either going to walk, or get wet, but that my

faith has been misplaced in the medical profession - my faith should be

in God. That is not to say that medical science isn't a gift from God -

but it is to say that it's not the complete answer, and in my case, the

answers had stopped.

Blessings have now been bestowed upon me. I have felt better than

I have for 3 months, and although my eyes still seem to have an issue

with photophobia, and perhaps always will, it has decreased, and I now

have a great deal more energy.

Miracles do happen every day, and I pray that we can each have a

miracle today, even if it is a small one.

Blessings to you all!

Lovette

[Guest guest]

Dear Lovette,

That is sooooo awesome. We have an awesome and compassionate God. Praise the

Lord for your healing!!!

God Bless you and thanks for the encouragement

Sandy

[Guest guest]

I have twitches too. I call them tremor. I was told you don't get them with

RA. I beg to differ.

jean macintosh <ctsofa@...> wrote:

Twitches - i ve been getting little twitches especially legs

ocassionally fingers I t never lasts for long a couple of days but they appear

in different places - anyone know if this is RA ?

Send instant messages to your online friends http://uk.messenger.

[Guest guest]

Twitching can be related to many things, but, in RA, peripheral neuropathy

is very common and could be responsible. Restless leg syndrome is another

possibility. One of your medications could also be the culprit.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] twitches

> Twitches - i ve been getting little twitches especially legs ocassionally

> fingers I t never lasts for long a couple of days but they appear in

> different places - anyone know if this is RA ?

[Guest guest]

>

>

> I have twitches too. I call them tremor. I was told you don't

get them with RA. I beg to differ.

>

>

I think when one has RA, they will also have symptoms like Gout,

restless leg, palsey, peripheral neurotomy, Lupus, fatigue

symndroms, chest pains...it can hit you anywhere.

one good thing is that the same meds are pretty much used for all

of these.

I have all of the symptoms off and on part of the time. I was

finally diag'd as fibro after years of " can't find anything wrong, "

then peripheral Neurotomy, possibly fatigue syndrom, and finally

RA.

If you do have chest pains, you might ought too have it checked.

From what I understand, chest pains (possible heart problems) could

be covered up to some extent by the pain pills being taken for RA.

just a thought.

soft hugs, Leo/lee

[Guest guest]

I don't think it's normal for SMA and suggest you see a neurologist soon.

 Lori

________________________________

From: kendrascalia <kendranicole@...>

Sent: Sun, January 24, 2010 4:25:55 PM

Subject: twitches

 

I've been a bit quiet in recent months. I've been quite busy, and also just

spent the last few weeks recovering from my first bout of pneumonia. I'm still

very exhausted and a bit wheezing sound, but on the way up.

In the last couple weeks, however, I've been having constant 24/7 twitching of

my left foot. I can't stop it and it occurs even while I sleep. It isn't

painful; it's just annoying. I woke up one morning and my left eye and fingers

on the left hand are twitching also. This is not " shaking " but actual

muscle/neuro twitching. Is this normal for people with SMA? Should I be

concerned and see a neurologist or just accept this as another development?

<3Kendra

[Guest guest]

Those are called Fasciculations. I once had a Neurologist ask me

if I ever had them. I said no but later realized I was having them all

the time. I was just so used to them I didn't pay any attention.

Once in a while, I get them in my eyelids, that really bugs me otherwise not

that big a thing for me.

[Guest guest]

You have my sympathies on the pneumonia. My first (and only so far,

knock wood) bout of pneumonia scared the hoo haw out of me. I don't

think it's a bad idea to see a neurologist, but I get twitches

occasionally. When I get them they're fairly persistent for a few days

and then they either move to another part of my body or stop for a

while. Mine are most often around my face, but I get them occasionally

on my right hand. I'm not a big fan of going to the doctor, so I've

mostly ignored them.

kendrascalia wrote:

>

>

> I've been a bit quiet in recent months. I've been quite busy, and

> also just spent the last few weeks recovering from my first bout of

> pneumonia. I'm still very exhausted and a bit wheezing sound, but on

> the way up.

>

> In the last couple weeks, however, I've been having constant 24/7

> twitching of my left foot. I can't stop it and it occurs even while I

> sleep. It isn't painful; it's just annoying. I woke up one morning

> and my left eye and fingers on the left hand are twitching also. This

> is not " shaking " but actual muscle/neuro twitching. Is this normal

> for people with SMA? Should I be concerned and see a neurologist or

> just accept this as another development?

>

>

--

Guy W.

San Leandro, CA

http://www.xango.org http://stonebender.livejournal.com/

" If you can't believe what you read in comic books, what can you believe? "

-- Bullwinkle J. Moose

[Guest guest]

I get twitches from time to time. I think a neurogolist told me once that it is

the result of motor neurons attempting to branch out and re-establish lost

connections due to other motor neurons dying. A natural process for somebody

with SMA.

I'm not positive where I heard that, but it's the explanation I have.

>

> I've been a bit quiet in recent months. I've been quite busy, and also just

spent the last few weeks recovering from my first bout of pneumonia. I'm still

very exhausted and a bit wheezing sound, but on the way up.

>

> In the last couple weeks, however, I've been having constant 24/7 twitching of

my left foot. I can't stop it and it occurs even while I sleep. It isn't

painful; it's just annoying. I woke up one morning and my left eye and fingers

on the left hand are twitching also. This is not " shaking " but actual

muscle/neuro twitching. Is this normal for people with SMA? Should I be

concerned and see a neurologist or just accept this as another development?

>

> <3Kendra

>

[Guest guest]

These are called fasciculations..my daughter has had them pretty much since day

one..if she tries to stick her tongue out it looks like worms are crawling under

the skin. She gets a fine tremor in her fingertips as well as her eyes

sometimes..completely normal with SMA. I'm not sure, however, whether or not

they can be treated safely.  I do believe that they are exacerbated with

fatigue though...

 

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

 

Jen, Mom to my miracle, Jerika Jenae Lynn, 8 years old , SMA Type II

 

www.myspace.com/jenjerika

http://smaspace.ning.com/profile/JENBOLEN

www.smaspace.com

www.cursesma.org

www.smasupport.com

 

  " Our greatest weakness lies in giving up. The most certain way to succeed is

always to try just one more time. " - Edison

 

 

From: boojiboy71 <boojiboy@...>

Subject: Re: twitches

Date: Wednesday, January 27, 2010, 9:54 AM

 

I get twitches from time to time. I think a neurogolist told me once that it is

the result of motor neurons attempting to branch out and re-establish lost

connections due to other motor neurons dying. A natural process for somebody

with SMA.

I'm not positive where I heard that, but it's the explanation I have.

>

> I've been a bit quiet in recent months. I've been quite busy, and also just

spent the last few weeks recovering from my first bout of pneumonia. I'm still

very exhausted and a bit wheezing sound, but on the way up.

>

> In the last couple weeks, however, I've been having constant 24/7 twitching of

my left foot. I can't stop it and it occurs even while I sleep. It isn't

painful; it's just annoying. I woke up one morning and my left eye and fingers

on the left hand are twitching also. This is not " shaking " but actual

muscle/neuro twitching. Is this normal for people with SMA? Should I be

concerned and see a neurologist or just accept this as another development?

>

> <3Kendra

>

[Guest guest]

These twitches are extremely different than tremors. I have had tremors since

the beginning, shaking fingers and tongue. These are actual large involuntary

twitches in addition to my tremors.

> >

> > I've been a bit quiet in recent months. I've been quite busy, and also just

spent the last few weeks recovering from my first bout of pneumonia. I'm still

very exhausted and a bit wheezing sound, but on the way up.

> >

> > In the last couple weeks, however, I've been having constant 24/7 twitching

of my left foot. I can't stop it and it occurs even while I sleep. It isn't

painful; it's just annoying. I woke up one morning and my left eye and fingers

on the left hand are twitching also. This is not " shaking " but actual

muscle/neuro twitching. Is this normal for people with SMA? Should I be

concerned and see a neurologist or just accept this as another development?

> >

> > <3Kendra

> >

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I get the same things going on all the time. If I try to do too much in one day

I get those twitches. Also, If I sit or stay in bed bed too much I get them too.

So I guess there is a happy medium there somewhere. I also get them more if I am

sick with a cold or flu. Vitamin B12 supplements also increase the

fasciculations on me and keep me awake all night. I also have to keep away from

coffee,tea,cola,cocoa,and chocolates in order to keep the jerkings to a minimum.

It can take a week or more for the effects of eating or drinking any of those

things to get out of my system. I suppose everyone is different but that is my

experience with this.

>

> I've been a bit quiet in recent months. I've been quite busy, and also just

spent the last few weeks recovering from my first bout of pneumonia. I'm still

very exhausted and a bit wheezing sound, but on the way up.

>

> In the last couple weeks, however, I've been having constant 24/7 twitching of

my left foot. I can't stop it and it occurs even while I sleep. It isn't

painful; it's just annoying. I woke up one morning and my left eye and fingers

on the left hand are twitching also. This is not " shaking " but actual

muscle/neuro twitching. Is this normal for people with SMA? Should I be

concerned and see a neurologist or just accept this as another development?

>

> <3Kendra

>

[Guest guest]

I had an EEG way back when my muscle problems first began and the test showed

that the twitches were not coming from my brain. The problems were all in the

muscles alone. I had to learn on my own how to keep them under control. The two

dozen pcp and neurologists I saw over ten years were not any help at all. Most

of them gave me only harmful advice.

> > >

> > > I've been a bit quiet in recent months. I've been quite busy, and also

just spent the last few weeks recovering from my first bout of pneumonia. I'm

still very exhausted and a bit wheezing sound, but on the way up.

> > >

> > > In the last couple weeks, however, I've been having constant 24/7

twitching of my left foot. I can't stop it and it occurs even while I sleep. It

isn't painful; it's just annoying. I woke up one morning and my left eye and

fingers on the left hand are twitching also. This is not " shaking " but actual

muscle/neuro twitching. Is this normal for people with SMA? Should I be

concerned and see a neurologist or just accept this as another development?

> > >

> > > <3Kendra

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Wow, I never heard that before. Interesting. I get little twitches of my right

eyelid if I am under extreme stress for a prolonged period.

________________________________

From: boojiboy71 <boojiboy@...>

Sent: Wed, January 27, 2010 9:54:20 AM

Subject: Re: twitches

 

I get twitches from time to time. I think a neurogolist told me once that it is

the result of motor neurons attempting to branch out and re-establish lost

connections due to other motor neurons dying. A natural process for somebody

with SMA.

I'm not positive where I heard that, but it's the explanation I have.

>

> I've been a bit quiet in recent months. I've been quite busy, and also just

spent the last few weeks recovering from my first bout of pneumonia. I'm still

very exhausted and a bit wheezing sound, but on the way up.

>

> In the last couple weeks, however, I've been having constant 24/7 twitching of

my left foot. I can't stop it and it occurs even while I sleep. It isn't

painful; it's just annoying. I woke up one morning and my left eye and fingers

on the left hand are twitching also. This is not " shaking " but actual

muscle/neuro twitching. Is this normal for people with SMA? Should I be

concerned and see a neurologist or just accept this as another development?

>

> <3Kendra

>

[Guest guest]

Hey kimberly-glad you are on your way to recovery with explant being behind you. I definitely had twiches thru out my body. A couple months before explant and then about a month after. They were thru out my body-i felt like a puppet on a string it was so bizarre. And yes it drove me crazy too! Sometimes it felt like someone was holding an electrical wire and poking me. It wasn't all the time just sporadically. I can't say exactly what stopped them but I just continued to detox and they have stopped completely (now 4 months post explant). I had a lot of neurotransmitters off and took supplements for that too. With our organs dealing with all the toxic chemicals from the silicone shell, it just throws everything out of whack. So even if they tell you your thyroid is fine, hormones and neurotransmitters can still be way off. The only drs that do that kind of testing are Naturpathic ones-they can do saliva testing. Sometimes pricey. But your body will balance out too if you don't get the tests done. As I've been told and am learning the hard way, you need patience, but you will get better . Hugs,BevSent via BlackBerry by AT&TFrom: Swinney <kswinney21@...>Sender: Date: Sat, 22 Jan 2011 12:01:55 -0800 (PST)< >Reply Subject: TWITCHESI have had my silicone implants out for a little over a month (and I only had them in for 5 months). And the endo dr says it isn't my thyroid and that I should quit taking the lil dose of synthroid that I have been taking. However the most significant problem I am having is twitching. My face, legs, butt, and arms. They come and go, has anyone else had twitching?? Please HELP, its driving me CRAZY!!Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use .

[Guest guest]

Ya i had the same problem mine was in for 2 years 18 to 20 years old

24 now any way my doctor had me on quite a few things viteums (sorry

cant spell today) meds and a weekly body flush for about 12 weeks

after i had them out and took about another 6 weeks after to stop

mostly about a year for my sholder back and rear to stop shaking

randomly tho i noticed that it was worse during stress and if that

body part was getting use as in to be blunt going to the bathroom i

noticed my butt would quiver a lot why i was pushing to go but take it

easy get some probododics (sorry spelling agian) lots of yougorts and

vitams and lots and lots of fresh clean cold water will help along

with acupuncher and eleto stim can help also place i was at did both

so hope this helps you out

On 1/22/11, moodynomad@... <moodynomad@...> wrote:

> Hey kimberly-glad you are on your way to recovery with explant being behind

> you. I definitely had twiches thru out my body. A couple months before

> explant and then about a month after. They were thru out my body-i felt like

> a puppet on a string it was so bizarre. And yes it drove me crazy too!

> Sometimes it felt like someone was holding an electrical wire and poking me.

> It wasn't all the time just sporadically. I can't say exactly what stopped

> them but I just continued to detox and they have stopped completely (now 4

> months post explant). I had a lot of neurotransmitters off and took

> supplements for that too. With our organs dealing with all the toxic

> chemicals from the silicone shell, it just throws everything out of whack.

> So even if they tell you your thyroid is fine, hormones and

> neurotransmitters can still be way off. The only drs that do that kind of

> testing are Naturpathic ones-they can do saliva testing. Sometimes pricey.

> But your body will balance out too if you don't get the tests done. As I've

> been told and am learning the hard way, you need patience, but you will get

> better .

> Hugs,

> Bev

> Sent via BlackBerry by AT & T

>

> TWITCHES

>

> I have had my silicone implants out for a little over a month (and I only

> had them in for 5 months). And the endo dr says it isn't my thyroid and that

> I should quit taking the lil dose of synthroid that I have been taking.

> However the most significant problem I am having is twitching. My face,

> legs, butt, and arms. They come and go, has anyone else had twitching??

> Please HELP, its driving me CRAZY!!

>

>

>

>

> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

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