Re: [TMIC] myoclonic jerks
Patti, I love it! What a sense of humor you have! Hugs Linda in still rainy Bothell, WA - soon we will need life jackets and a boat -- Original message -- From: <[EMAIL PROTECTED]> > Thanks for the info on clonus. Was I the only one who laughed when I read the > term "myoclonic jerks"? I don't think it is proper for a lady to call a person > a "jerk". However, TM ladies can now call a person myoclonic and still be > proper! Just another TM term that the rest of the world might not understand! > Now if I can just remember the word!!! > > Patti - Michigan > Class of 2003 > > If this comes through three time, it isn't because I felt it was that important. > I keep hitting wrong buttons and can't find my message. >
Re: [TMIC] stiffness and regression?
HI!! I TOOK ORAL BACLOFEN FOR 5 YEARS AND IT PRETTY MUCH DESTROYED ANY MASS OF MUSCLE I HAD IN MY LEGS,IVE BEEN POST TM SINCE FEB 2000,LAST YEAR I SPENT 10 DAYS IN THE HOSPITAL WITH LIVER PROBLEMS,MY BLOOD PRESSURE WAS THROUGH THE ROOF AND MY SUGAR WAS OUT OF CONTROLL,I WAS TAKEN OFF THE BACLOFEN AND IN A COUPLE OF MONTHS EVERYTHING STARTED TO REGULATE AND IVE BEEN OK SINCE THEN,WITH THE ACCEPTION OF THE MUSCLE LOSS,BACLOFEN CAN BE A WICKED DRUG AS FAR AS SIDE EFFECTS,ie:MUSCLE LOSS,FATIGUE AND WEAKNESS.I HAVE A BACLOFEN PUMP NOW WHICH PUTS THE MEDICATION DIRECTLY TO THE INJURY SITE IN A LOW DOSE SO IT BYPASSES EVERYTHING ELSE,SYSTEM WISE.I WOULD EXPLORE OTHER OPTIONS BEFORE CONSIDERING THIS MED.THE SIDE EFFECTS CAN BE WICKED.I STARTED THE SAME WAY YOUR HUSBAND DID WITH THE WEAKNESS AND FOOT DROOP,AND HAVE WHEELCHAIR BOUND SINCE SUMMER OF 2000.IF HES RELAPSING THEN THE DOCS WILL START LEANING TWORD MS,TM CAN HAVE A FLARE UP OF SYMPTOMS, THERE ARE NO RELAPSES! OF TM IT IS USUALLY DIAGNOSED AS MS AFTER A SECOND TIME.THERE COULD POSS BE SOMTHING ELSE GOING ON.THE FIRST THING IS YOU NEED TO FIND A GOOD DOCTOR THAT UNDERSTANDS THE DISEASE AND HOW IT WORKS.THIS WAS MY FIRST MISTAKE,NONE OF THE LOCALS UNDERSTOOD WHAT THEY WERE DEALING WITH.PLEASE LET ME KNOW WHAT YOU FIND OUT AND PLEASE FIND EVERY RESCOURCE OUT THERE,AND FIND A BETTER NEUROLOGIST. JEFF CENTRAL NY USA PS:DID YOUR HUSBAND GET A FLU SHOT BEFORE THE ONSET OF HIS SYMPTOMS? IM JUST CURIOUS TO KNOW.Poonam Mahadev Thapa <[EMAIL PROTECTED]> wrote:Hi I am new on this list and not a patient but my husband has been suffering from TM since Nov 04. He made very good progress uptil June 05 and was walking fine(!) upto a distance of almost 800 meters without support. But then he had a urine infection with fever and E. Coli stuck on to his bladder bringing in recurrent infections. That made him very weak in the legs and since then he has been deteriorating in strength. He is travelling to India to get checked up again as Kenya is way out and the Neurologist is not familiar with the disease. He says it is a relapse of TM. Is that possible? He had drooping left eyelid on and off for about a month then it stopped to droop on its own completely. After that he seemed to have foot drop and that went with physiotherapy and T! ENS and the physio felt it wasn't foot drop at all. He barely had spasms initially and now he walks on springs it seems. He is on Tizanidine and Gabapentin. Anyone going through with urine infectons? We are trying cranberry extract and Uva Ursi alternately and have just come across D Mannose. Anyone ever used these herbal medicines? Do they have any side effects? Ae they compatible with Neurontin/Gabapentin or Tizanidine / Baclofen?? Any ino or ideas about it??? regards to all Nima DIPLOMACY DOES NOTWORK WHEN DEALING WITHNUT'S HELL BENT ONDESTROYING US. What are the most popular cars? Find out at Yahoo! Autos
Re: [TMIC] RE: Soc. Security/ SSDI
KRISSY TAKE ADVANTAGE OF ANYTHING YOU CAN GET IF YOUR UNABLE TO WORK,WHEN YOUR TRYING TO SUPPORT A FAMILY YOU HAVE TO,AND YES SSI\DISABILITY IN RETROACTIVE BACK TO 3 MONTHS.I WOULD GET THINGS GOING ASAP IF YOU HAVN'T .THE GOVT LIKES TO DRAG THEIR BUTTS ESPECIALLY WHEN IT COMES TO MONEY.TAKE ANYTHING YOU CAN GET.IF YOUR GIVEN A HARD TIME REFFER TO A DISABILITY LAWYER. JEFFKrissy <[EMAIL PROTECTED]> wrote: well, I applied online for SSDI, we shall see..I found my statement from July of '05, and I'm not sure I have enuff credits to qualify for disability. Retirements yes and death hehe...but I guess we will see what they say. I have been a stay at home mom for 4 years now, but worked up till then. I was planning on going back to work once my little one was in first grade, which would have been this past Sept (05) but of course now...I am unable to yet... Som! eone also told my husband that it would be retroactive 3 months too? Krissy DIPLOMACY DOES NOTWORK WHEN DEALING WITHNUT'S HELL BENT ONDESTROYING US. Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, & more on new and used cars.
Re: [TMIC] stiffness and regression?
Hi I am new on this list and not a patient but my husband has been suffering from TM since Nov 04. He made very good progress uptil June 05 and was walking fine(!) upto a distance of almost 800 meters without support. But then he had a urine infection with fever and E. Coli stuck on to his bladder bringing in recurrent infections. That made him very weak in the legs and since then he has been deteriorating in strength. He is travelling to India to get checked up again as Kenya is way out and the Neurologist is not familiar with the disease. He says it is a relapse of TM. Is that possible? He had drooping left eyelid on and off for about a month then it stopped to droop on its own completely. After that he seemed to have foot drop and that went with physiotherapy and TENS and the physio felt it wasn't foot drop at all. He barely had spasms initially and now he walks on springs it seems. He is on Tizanidine and Gabapentin. Anyone going through with urine infectons? We are trying cranberry extract and Uva Ursi alternately and have just come across D Mannose. Anyone ever used these herbal medicines? Do they have any side effects? Ae they compatible with Neurontin/Gabapentin or Tizanidine / Baclofen?? Any ino or ideas about it??? regards to all Nima
[TMIC] RE: Soc. Security/ SSDI
well, I applied online for SSDI, we shall see..I found my statement from July of '05, and I'm not sure I have enuff credits to qualify for disability. Retirements yes and death hehe...but I guess we will see what they say. I have been a stay at home mom for 4 years now, but worked up till then. I was planning on going back to work once my little one was in first grade, which would have been this past Sept (05) but of course now...I am unable to yet... Someone also told my husband that it would be retroactive 3 months too? Krissy
Re: [TMIC] RE:THE MUSCLE TREMORS QUESTION
I NO THAT ONE ONLY TO WELL !!! I JUST LET THE SPAZ HIT ME IF OUT IN PUBLIC AND CANNOT TURN TO HIDE MY SCRATCHING. IN THE SUMMER, IT IS WORSE This electronic message is confidential and is intended only for the use of the individual to whom it is addressed. The information may also be legally privileged. This transmission is sent in trust, for the sole purpose of delivery to the intended recipient. If you have received this transmission in error, you are hereby notified, that any use, dissemination, distribution or reproduction of this, transmission is strictly prohibited. If you are not the intended, recipient, please immediately notify me by reply electronic message and delete the message from your system. IRS Circular 230 Notice: Any advice contained in this message was not written and is not intended to be used, and cannot be used, by any taxpayer for the purpose of avoiding penalties with respect to taxes that may be imposed upon the taxpayer. - Original Message - From: To: tmic-list@eskimo.com Sent: 1/31/2006 12:45:29 PM Subject: Re: [TMIC] RE:THE MUSCLE TREMORS QUESTION In a message dated 1/31/2006 11:50:04 AM Eastern Standard Time, [EMAIL PROTECTED] writes: I DO KNOW ONE MORE THING I EXPERIENCE, AND THAT IS IF I GET AN ITCH ON MY SKIN, IT WILL CAUSE A CLONUS-MYO- OR NOT, EXPECIALLY IF ON THE BOTTOM OF MY FOOT !!! I get something like that, too -- in the bend between my leg and torso I'll get a little twitch that will a second or two later cause my leg to jerk a few times. If I rub the area just a little it will prevent it, but if I am out in public it is a little awkward to rub that area... Barbara H.
Re: [TMIC] RE:THE MUSCLE TREMORS QUESTION
In a message dated 1/31/2006 11:50:04 AM Eastern Standard Time, [EMAIL PROTECTED] writes: I DO KNOW ONE MORE THING I EXPERIENCE, AND THAT IS IF I GET AN ITCH ON MY SKIN, IT WILL CAUSE A CLONUS-MYO- OR NOT, EXPECIALLY IF ON THE BOTTOM OF MY FOOT !!! I get something like that, too -- in the bend between my leg and torso I'll get a little twitch that will a second or two later cause my leg to jerk a few times. If I rub the area just a little it will prevent it, but if I am out in public it is a little awkward to rub that area... Barbara H.
[TMIC] iching and clonus
I thought my brain was the only one that gets mixed up with itching. I get clonus in my right hand when my eyes or nose itches. I kind of thought it to be that my hand wanted to start itching at the same time my brain registered that I felt an itch. I couldn't tell anyone asbout it because that would make my hand smarter than my brain. Well, maybe! Patti - Michigan
[TMIC] myoclonic jerks
Thanks for the info on clonus. Was I the only one who laughed when I read the term "myoclonic jerks"? I don't think it is proper for a lady to call a person a "jerk". However, TM ladies can now call a person myoclonic and still be proper! Just another TM term that the rest of the world might not understand! Now if I can just remember the word!!! Patti - Michigan Class of 2003 If this comes through three time, it isn't because I felt it was that important. I keep hitting wrong buttons and can't find my message.
Re: [TMIC] RE:THE MUSCLE TREMORS QUESTION
YOU BEAT ME TO IT, I FOUND THE SAME WEB SITE, BUT DID NOT FIND TONUS. I THINK IT IS A DERIVATIVE OF TONE AS IT WAS DESCRIBED TO ME BY MY PSYIATRIST WHO WAS A QUAD AND HE WAKED WITH THE AID OF HIS TONUS AND CANADIAN BRACES. HE SAID WITHOUT HIS TONUS, HE WOULD NOT BE ABLE TO. IT IS A CONTINUED AND LONG IN DURATION MUSCLE TIGHTENING. WHATEVER IT IS AND WHATEVER CALLED, I WOULD NOT BE ABLE TO SIT UP AND TRANSFER AS EASILY OR BEND OVER AND BACK. I DO KNOW ONE MORE THING I EXPERIENCE, AND THAT IS IF I GET AN ITCH ON MY SKIN, IT WILL CAUSE A CLONUS-MYO- OR NOT, EXPECIALLY IF ON THE BOTTOM OF MY FOOT !!! BOB FROM HOUSTON-SPRING, TEX PARA @ T-1 CLASS OF 1994 - Original Message - From: To: tmic-list@eskimo.com Sent: 1/31/2006 9:24:20 AM Subject: Re: [TMIC] RE:THE MUSCLE TREMORS QUESTION In a message dated 1/31/2006 9:57:39 AM Eastern Standard Time, [EMAIL PROTECTED] writes: Clonus !! I searched for that online and found a definition in http://www.mult-sclerosis.org/clonus.html which says: "Clonus is repetitive, rhythmic contractions of a muscle when attempting to hold it in a stretched state. It is a strong, deep tendon reflex that occurs when the central nervous system fails to inhibit it. Clonus is not the same thing as myoclonus, which is irregular and uncontrollable jerks of a muscle or group of muscles. " I looked up myoclonus as well, which is defined as: "Myoclonus describes sudden and uncontrollable jerks of a muscle or a group of muscles. The word, "myoclonus", comes from "myo" meaning muscle and "clonus" meaning twitch. It can happen at rest (negative myoclonus) or with movement (positive myoclonus). Myoclonus can occur infrequently or every few seconds and can range in severity from a minor irritation to a disabling symptom that can make walking or other activities very difficult. Some myoclonic jerks are quite normal - hiccoughs (hippcups) and the twitches as you fall asleep are both examples of myoclonus. However, myoclonus is often associated with neurological or biochemical conditions including multiple sclerosis, Parkinson's disease, stroke, spinal cord injury, kidney or liver failure and lipid storage disease. Other forms occur in the absence of any other disease. Myoclonus in one or both legs during the night is known as Noctural Myoclonus or Restless Leg Syndrome (RLS) and can also occur in the absence of any other disease. Myoclonic jerks are often seen during epileptic siezures. Although it can be caused by damage to peripheral nerves, most forms of myoclonus are caused by problems in the central nervous system. The precise mechanisms unlying it are not fully understood and it is possible that the different forms may have different causes. Some people speculate that it results from a chemical imbalance in neurotransmitters causing nerves to become over-excitable. Another theory is that nerve signals from the brain, that would normally suppress these primitive reflexes, may be prevented from getting through by nerve damage. Clonazepam, Piracetam, Sodium valproate, Phenytoin and Primidone and several other tranquilising or anti-epilepsy drugs are often used to treat myoclonus. " Myoclonus sounds like what I am experiencing. Also found an interesting web site at http://www.wemove.org/ -- a lot of info. on movement-related disorders. Barbara H.
Re: [TMIC] RE:THE MUSCLE TREMORS QUESTION
In a message dated 1/31/2006 9:57:39 AM Eastern Standard Time, [EMAIL PROTECTED] writes: Clonus !! I searched for that online and found a definition in http://www.mult-sclerosis.org/clonus.html which says: "Clonus is repetitive, rhythmic contractions of a muscle when attempting to hold it in a stretched state. It is a strong, deep tendon reflex that occurs when the central nervous system fails to inhibit it. Clonus is not the same thing as myoclonus, which is irregular and uncontrollable jerks of a muscle or group of muscles. " I looked up myoclonus as well, which is defined as: "Myoclonus describes sudden and uncontrollable jerks of a muscle or a group of muscles. The word, "myoclonus", comes from "myo" meaning muscle and "clonus" meaning twitch. It can happen at rest (negative myoclonus) or with movement (positive myoclonus). Myoclonus can occur infrequently or every few seconds and can range in severity from a minor irritation to a disabling symptom that can make walking or other activities very difficult. Some myoclonic jerks are quite normal - hiccoughs (hippcups) and the twitches as you fall asleep are both examples of myoclonus. However, myoclonus is often associated with neurological or biochemical conditions including multiple sclerosis, Parkinson's disease, stroke, spinal cord injury, kidney or liver failure and lipid storage disease. Other forms occur in the absence of any other disease. Myoclonus in one or both legs during the night is known as Noctural Myoclonus or Restless Leg Syndrome (RLS) and can also occur in the absence of any other disease. Myoclonic jerks are often seen during epileptic siezures. Although it can be caused by damage to peripheral nerves, most forms of myoclonus are caused by problems in the central nervous system. The precise mechanisms unlying it are not fully understood and it is possible that the different forms may have different causes. Some people speculate that it results from a chemical imbalance in neurotransmitters causing nerves to become over-excitable. Another theory is that nerve signals from the brain, that would normally suppress these primitive reflexes, may be prevented from getting through by nerve damage. Clonazepam, Piracetam, Sodium valproate, Phenytoin and Primidone and several other tranquilising or anti-epilepsy drugs are often used to treat myoclonus. " Myoclonus sounds like what I am experiencing. Also found an interesting web site at http://www.wemove.org/ -- a lot of info. on movement-related disorders. Barbara H.
Re: [TMIC] RE:THE MUSCLE TREMORS QUESTION
MINE IS TONUS, NOT CLONUS, AND I USE IT TO MOVE MY BODY, , , , , NOT THAT I DO NOT ALSO HAVE CLONUS = A JUMPING IN THE LEGS OR FEET AFTER SOME STIMULUS = , BUT I WAS INFORMED THAT LONGER PERIODS OF DURATION OF CONTINUED INVOLUNTARY-UNCONTROLLED OR INVOLUNTARILY INDUCED MUSCLE FLEXATION IS TONUS.. . . . THAT WAS THE STUFF I WAS TOLD WAY BACK IN 1994 BUT, WHAT DO I KNOW, I AM USUALLY WRONG THESE DAYS SINCE I DON'T KEEP UP ON THE STUFF, I JUST GOT TM AND GET ALONG WITH IT ANY WAY I CAN. BOB FROM HOUSTON - SPRING, TX PARA @ T-1, CLASS OF 1994 > [Original Message] > From: [EMAIL PROTECTED] <[EMAIL PROTECTED]> > To: jeff bernier <[EMAIL PROTECTED]>; tmic-list@eskimo.com > Date: 1/31/2006 8:57:34 AM > Subject: Re: [TMIC] RE:THE MUSCLE TREMORS QUESTION > > >MUSCULAR CLONES, > > Clonus !! > > cannabinoids work well to stop clonus and spasticity. > > f >
Re: [TMIC] RE:THE MUSCLE TREMORS QUESTION
>MUSCULAR CLONES, Clonus !! cannabinoids work well to stop clonus and spasticity. f
Re: [TMIC] stiffness and regression?
In a message dated 1/30/2006 5:31:49 PM Eastern Standard Time, [EMAIL PROTECTED] writes: The neuro did say the stiffness and the bowel/urine controls are all assoc. with the nerves and that's fine, I can deal with that. I do see smaller improvements in other areas. But does this regress or seemingly get worse a times? Krissy Yes, it can be worse at times. There were times in the first few years of TM that I'd almost think I was having another attack. It can be made worse by stress, lack of sleep, illness, and sometimes for no obvious reason at all. Barbara H.
[TMIC] Soc Sec disability
is it worth it for me to apply for soc sec benefits? Someone had mentioned it to my husband, since I am now disabled and not really able to work as I was planning on. How do I go about this? Krissy
