Twitching and the whole fascilation thing....

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby TwistedHelix » Sun Nov 09, 2008 6:26 am

Chris,
I've been quite distracted recently by a few forums about the behaviour of comedians on the BBC. Quite a few of the contributors seem to me to be quite obnoxiously self-righteous; consumed with indignation at anything which threatens their safe little world.

Then I read your story, and I can't describe how proud I am to be in the company of people like you: you have faced up to and beaten terrible monsters – any one of which would have defeated most people – and here you are: still standing and fighting in the face of a new enemy. Most of those other people think their world has come to an end if the TV schedules change; I'd love to see them put up with 10% of what you've been through.
You're quite hard on yourself about your past, but it's nothing to be ashamed of and quite possibly may have forged the strength of character you clearly have now.

There is absolutely, positively, definitely, incontrovertibly, no way you caused your own MS: drugs may have caused some nerve damage, and therefore compromised some of the spare capacity in your brain, but not the disease itself.

My legs often twitch when I'm in bed and it never really worries me, but on the rare occasions I get an electric shock down my arms I sometimes fret that it's an early sign of Huntington's Disease – which my brother has – and I tell myself to concentrate on what I know rather than what I fear.

Incidentally, I second that about your photo… definitely more university professor than ex drug addict.
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Postby naspass » Sun Nov 09, 2008 8:47 am

I am an avid reader of this site and have benefited greatly from everyone on this site but I have only posted a few times. This is one area I might be able to add some value. Twitching was a big issue for me during diagnosis and it scared the crap out of me based on what I read on the internet about ALS. My first neuro thought I was crazy and suggested eating a banana for Potassium. News flash that did nothing but once I had an appointment with an MS specialist he laughed at the whole banana thing.

The new neuro, a very bright guy, strongly suggested Magnesium Citrate to help with twitching. It did wonders for me - I would forget about the twitching until I would forget to take the Mag and then it would come back. Magnesium was an amazing fix for this irritating symptom. Chris give it shot, I hope it helps you!
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Postby chrishasms » Sun Nov 09, 2008 7:58 pm

The electric shocks used to bug me bad and they have stopped unless I am hot, stressed, or overworked. Otherwise I nver get them, and since the treatment it's really got to be one hell of a workout. I believe it's actually an effect of L'hermitte's sign.

Oh the fun of it all...

I have tried some Vitamin D supplements and the twitching seems much better.

You guys are great.
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My Insurance company

Postby Maeve » Mon Nov 10, 2008 11:37 am

My Insurance company turned down my disability claim stating that past cocaine and marijuana use most likely accounted for the lesions in my nervous system and the fatigue caused by MS . . . this was supposedly the conclusion of their neurological team . . . they said that since my Dr. didn't do a lumbar puncture (because, he said, my "brain and spine are riddled with lesions") that I had most likely been misdiagnosed . . .

So, though I know that I didn't do this to myself, I have professionals asserting that I did . . . *sigh*
Last edited by Maeve on Mon Nov 10, 2008 11:43 am, edited 1 time in total.
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Postby chrishasms » Mon Nov 10, 2008 11:44 am

Wow I have never ever heard that in my life. Did you get a second opinion?
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Postby Maeve » Mon Nov 10, 2008 11:51 am

I saw three different neurologists when I was first diagnosed, I wanted all the opinions I could get, and they all agreed . . .

When I lost my disability, I also lost my insurance . . . in order to appeal the decision I would have had to repeat all of my tests and include a lumbar puncture, I couldn't afford any of that . . .

So now I'm left with trying for SSDI which will take about 2-3 years . . . in the meantime, I have to live with family who doesn't understand, or believe, my symptoms and they constantly push me to find a job . . .

Anyone know of a job that doesn't include standing, lifting, bending, multi-tasking, or a schedule? (fatigue)
Last edited by Maeve on Mon Nov 10, 2008 11:56 am, edited 1 time in total.
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Postby chrishasms » Mon Nov 10, 2008 11:56 am

Where in the hell are you? North Dakota?
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Postby Maeve » Mon Nov 10, 2008 11:59 am

I'm in AZ . . . before my diagnosis, I worked Tech Support for Intuit, but I had to take disability because I couldn't make it through an eight hour day because of the fatigue . . .
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Re: My Insurance company

Postby NHE » Mon Nov 10, 2008 5:53 pm

Maeve wrote:My Insurance company turned down my disability claim stating that past cocaine and marijuana use most likely accounted for the lesions in my nervous system and the fatigue caused by MS . . . this was supposedly the conclusion of their neurological team . . . they said that since my Dr. didn't do a lumbar puncture (because, he said, my "brain and spine are riddled with lesions") that I had most likely been misdiagnosed . . .

So, though I know that I didn't do this to myself, I have professionals asserting that I did . . . *sigh*

Understand that an insurance company is a for profit business. In the US, their first response is to deny any claim that will cost them money using whatever grounds for the denial that they can fish up. Insurance company employees are required to deny a certain percentage of claims and they are even promoted in their jobs and receive bonuses based on their rate of claim denial. This is indeed a sad state of affairs and is one of the problems with our current health care system. If the doctors who made your initial diagnosis were aware of your past history of drug use and were still confident in their diagnosis of MS, then you may have legal grounds for seeking a reversal of your claim denial. At the very least, you should contact your doctors and see if they can offer you any assistance in getting your claim denial reversed.

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Postby Maeve » Mon Nov 10, 2008 6:09 pm

Yes, I know that's why they did it. I rather expected it honestly, it was an excellent disability plan if you could get it . . . I just didn't expect to be in a position with no money or insurance to fight it . ..

I finally got state medical but it still requires that I come up with a copay . . . therein lies the rub . . . . its not much truly, but I still owe my neurologist $20 bucks and I suspect he'll want that when he sees me, its already in collections . . . he is partly the reason I'm in such a jam . . . he waited till the absolute last minute, meaning the end of the extension they gave me, to turn in my paperwork for disability. It put me so far behind on payments for rent etc. that I had to move . . . he's not great at paperwork but he's a good neurologist . . .

You are sweet to care . . . as you can see, I'm not getting much support at home, though I thank God I still have a roof over my head! :) I have a good computer and internet hookup, and I'm wracking my brain trying to figure out what I can do from my home on my own schedule, at my own pace, when I feel well .

Ideas? Anyone?
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Advice

Postby lyndacarol » Mon Nov 10, 2008 7:28 pm

Maeve--NHE offers good information!

Is there a college office near you in AZ that could use your tech support abilities; could you use their career center?
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Re: My Insurance company

Postby Lyon » Mon Nov 10, 2008 7:31 pm

.
Last edited by Lyon on Sun Nov 27, 2011 12:06 pm, edited 1 time in total.
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Postby Maeve » Mon Nov 10, 2008 7:37 pm

Thanks LyndaCarol . . . you just triggered some ideas :D


Lyon - its in my medical records . . . They ask if you use drugs, and I figure a Dr. is not a cop so its best to be honest, so its in there that I used the cocaine about 25 years ago, and that I smoke to help the spasms and all the ridiculosity that comes with MS. None of my Dr's, GP, Neuro, or psychologist have any issues with me smoking . . . in fact, my shrink LOL has it noted on my chart: smokes marijuana, doesn't do drugs or drink . . .
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Twitching

Postby sandonpoint » Tue Nov 11, 2008 6:58 am

Was reading some info regarding twitching and this text below is pretty reassuring that fasculations do NOT mean ALS.

I have copied the entire text and pasted here . If its too long then the mods can delete it !

Detail Summary of the Mayo Clinic follow-up study of patients diagnosed with BFS

This article is the "detail summary" of that Mayo Clinic study that followed up on 121 patients with a diagnosis of "benign fasciculation syndrome".
Fasciculations occur in association with a variety of neuromuscular diseases. They may occur, however in the presence of no other abnormality. Reed and Kurland observed that spontaneous fasciculations were frequently noted by 70% of normal healthy individuals, particularly those with medical training. The study did not involve long-term follow-up.
We have designed a study to answer two specific questions. Is there a syndrome of benign fasciculations that is different from occasional fasciculations noted by most normal individuals? May these benign fasciculations be an early manifestation of motor neuron disease?

Methods of Study
From the computerized patient registry and the records of the Clinical Neurophysiology Laboratory of the Mayo Clinic, 137 patients were identified (between 1960 and 1988) who met the following criteria: (1) A presenting complaint led to the diagnosis of benign fasciculation. (2) Neurological examination was performed and recorded using the full Mayo neurological examination record by a staff neurologist. This examination was complete and normal. (3) An EMG examination had been completed and showed no evidence of motor neuron disease except for fasciculation potentials. (4)There was a minimum interval of 2 years between the diagnosis and follow-up.

Survey Method
The follow-up survey was a structured telephone interview with open-ended questions. These questions included confirmation of the original information in the patient history and specific questions about the appearance of weakness, family history, persistence of the original symptoms, factors precipitating the original symptoms, and any key factors that exacerbated or relieved existing symptoms.

Results
Of the 137 patients identified, 121 patients were available for follow-up interviews. Two patients had died, 1 of lung cancer and 1 of a self-inflicted gunshot injury. Eight patients declined the formal interview. On brief inquiry, none had developed significant neurological symptoms. Six patients were residents of countries other than the United States and follow-up was not attempted. There were 94 men and 27 women. The mean age at the time of presentation was 42.6 (range 20-72) years for men and women. The mean follow-up interval from time of diagnosis to time of interview was 7.2 (range, 2-32) years. The presenting complaints that led to the diagnose of benign fasciculations are summarized in the Table. Fasciculation was typically identified by the patient as a brief, painless twitch of a part of a muscle. The twitch did not usually produce noticeable joint movement.

Presenting Symptom, Number of Patients

Muscle twitching or fasciculation, 102
Generalized fatigue, 56
Cramps or muscle spasms, 52
Migrating paresthesiae, 51
Generalized muscle aches, 41
Concern about ALS, 17
Muscle stiffness, 17

"The total is greater than 121 because THE MAJORITY OF PATIENTS HAD SEVERAL PRIMARY SYMPTOMS."

Follow-up
None of the 121 patients reported any symptoms suggestive of motor neuron disease. Seventeen patients noted persistence of generalized fatigue but not specific weakness. Sixty of the patients indicated that their symptoms including fasciculations had improved, 40 observed no change since the time of their diagnosis, and 5 felt that the fasciculations had become more prominent. Sixteen patients noticed marked fluctuations of their fasciculations on a daily basis. Factors increasing the symptoms included physical exercise, stress, tiredness, and caffeine consumption. The distribution of fasciculations was generalized in 32 patients and restricted in 85 patients. Forty of the patients were nurses, physicians, physical therapists, or other medical professionals.

The general health of most of the individuals remained excellent. Four patients (present age, 55-68 years) had a diagnosis of leukemia, rheumatoid arthritis, prostate cancer, and Sjogrens syndrome. Two male patients had fathers who died of ALS within 2 years of the study participant presenting with benign fasciculations. One female patient had a maternal uncle with a diagnosis of ALS. One female patient's spouse died with ALS 18 months before her symptoms appeared. Four patients had relatives with multiple sclerosis. Three patients reported that they had first-degree relatives with muscle cramps or muscle twitching but nothing to suggest ALS.

In the follow-up interview, we asked patients whether, in retrospect, they could identify an event that triggered their symptoms. Nineteen patients reported an acute infectious illness in the month prior to onset of symptoms. This was typically a viral upper respiratory or gastrointestinal disturbance. A striking but typical example was a 40 year old professor of neurology who developed an acute and severe gastrointestinal illness with fever, vomiting, and diarrhea lasting 48 hours. Three days after the resolution of this illness, he developed profuse generalized fasciculations but no weakness. The fasciculations persisted until the time of the evaluation 3 weeks later. The profuse fasciculations were not visible clinically but were confirmed by EMG in four of five muscles examined. At follow-up 4 years later, the fasciculations persisted but were less noticeable. Function was entirely normal.
Twenty-two patients noted the onset of fasciculations during a period of increased emotional or physical stress. For 5 patients, medications may have contributed to symptoms; 4 were taking a B-agonist for asthma, and 1, thyroxine. In this latter patient, the fasciculations accompanied documented chemical hyperthyroidism and abated when the patient became euthyroid.

Fifty-one patients described migrating parenthesias. These were distinguished from the subjective feeling of fasciculation or twitching. The parenthesias were typically characterized as brief and of limited distribution. Fasciculations were rarely observed by the neurologist, even when the patient reported their presence and they were present via EMG.

EMG Data


One hundred two patients had completely normal EMG studies except for fasciculations. Nineteen patients had minor changes in conduction studies suggestive of mild peripheral neuropathy or they had limited study that was restricted to the symptomatic area, typically the face and bulbar muscles. In these patients, EMG had been carried out in limb muscles, but conduction studies in the legs were not sufficient to exclude mild distal sensory neuropathy. By definition, all of these patients had a normal physical examination. There was no difference in outcome between patients with minor conduction changes and those with normal conduction studies.
All patients had needle EMG examinations that were normal except for the observation of fasciculation. The mean number of muscles examined in each patient was 9.3 (range, 2 - 21). In 82 patients, the EMG noted at least one muscle with excessive fasciculations. The median number of muscles with excessive fasciculations was 2 (range, 1 - 13). Because an occasional fasciculation may be observed in a normal and asymptomatic individual, this judgment of excessive fasciculation was the subjective interpretation of the electromyographer. In all cases this was a fully trained neurologist-electromyographer.

Discussion
A syndrome of benign fasciculation emerges from a study of this group of 121 patients. In the majority of patients, excess fasciculations was demonstrated by EMG, which suggested that the symptom was not simply a heightened awareness of a normal phenomenon. Fifty-two percent of the 48 patients who presented with fasciculation "alone" were working in medical fields. This compared with 15 medical professionals among the other 73 patients. This suggests that awareness of the possible implications of fasciculations make an individual more likely to seek specialized medical advice. A new observation was the acute onset of symptoms after a viral infection. This association was often striking, as in the case described. This raises the question as to whether, in some cases, the syndrome is related to a benign but perhaps persistent viral invasion of anterior horn cells. An alternative hypothesis is that the infection precipitates a very mild acute inflammatory polyradiculopathy with fasciculation as the only manifestation. The occurrence of fleeting sensory symptoms in almost half of the patients suggests that sensory neurons or roots may also be involved in the process. The uniformly benign prognosis was reassuring. All of the patients with normal examinations and EMG studies had a good outlook. In the subgroup of 15 patients with minor EMG abnormalities, the course was also benign. This suggests that if a patient with benign fasciculation has a normal physical examination performed by an experienced neurologist and a normal EMG examination, they can be strongly reassured. There is only one case in the literature of benign fasciculation progressing to become motor neuron disease. This patient had clear cut motor unit potential abnormalities that distinguished him from the patients we have described.

Conclusion
The syndrome of benign fasciculation, often associated with muscle cramps, appears to be a distinct entity. The historical data suggest that it is multifactorial in origin. The important conclusion is that if the physical examination is normal and the EMG studies are normal or do not suggest motor neuron disease, the patient can be reassured of a completely benign prognosis.
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Postby chrishasms » Tue Nov 11, 2008 7:52 am

Well I am not too worried about the ALS. I actually think I may have a really wicked case of some Anxiety Syndrome. In fact a good deal of my symptoms are in there.

The whole twitching what not I have suffered from since 2005 ish and it's still less than what it was at my heyday. I went online to see how I could lesson them and in the process I started reading about ALS and freaked myself out. Even the muscles that twitch I have less fatigue than ever in all muscles, I am still getting muscularly stronger, and I am still getting more flexible.

I really think after going through all I have it's got to me. Don't mention the hundreds of emails I get from people who have all these issues and they can't get better. My dad told me it's normal to actually have something like this finally get to me.

So I tried some leftover Ativan I got from the treatment at JH and low and behold I had a really good day. So the next day I made an appointment with a shrink and decided it's time to talk with someone. lol

I gotta get some more wood out of my eye so I can properly help others with theirs.
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