Signs of xmrv infection in family members

[free at last]

Something ive tried to talk about but which i feel isnt being discussed or understood very much at all, is a idea or theory or observation, of the effect of xmrv infection on the nervouse system, a quick story. when i was 16, 17 years old i slept with a girl who in the night i noticed her muscles ( nerves maybe ? ) were twiching quite strongly, odd i thought, but then thought nothing else about it, any way a short while later ( a week or two) i started getting quite violent muscle contractions ( would contract then release ) very strongly, i started getting this muscle or nerve moving jumping, everywhere, my arms legs face stomach, eyes chest hands even my skull. I never had this before i slept with this girl, and symptoms started very soon after, coincedence maybe. i dont think so.

Of course i had the occassional eye twitch, thats normal, its nothing, but this is very very different, much more powerful and violent, with every part of my body being affected, often two parts at the same time, and it would often move around my body, and change location, with frightening speed, though sometimes a area could get stuck with the problem for days.

After being tested positive for xmrv by Judy, i got to thinking about the muscle movement twitching in other ME/CFS patients, and i have found its a very common symptom

So how can one catch sever and prolonged muscle twitching, that just sounds crazy, but i tell you, it only started after sleeping with that girl, never ever before, she also confirmed to me that she did this to another person she slept with the plot thickens it seems.

The only way i can i see that this could actually be something that can be caught, is if a virus, or bacteria can cause these False fireings in nerves and muscles, to the degree that i have experianced for some thirty odd years. with almost every day of my life getting them in variouse parts of the body, that move around fast.

So what virus could unite ME/CFS patients that also experiance this problem, one that has the long term potential for the condition never to cease even after 30 years ( im now 47) . Of course XMRV.

Is there any evidence that upon infection of XMRV some patients develop this muscle twitching ? what damage or interuption could this virus be doing to our nervouse systems for such a persistent and common ( in ME possibly XMRV yet to be determined discussed ) has such damage or disruption been seen with othere retro viruses HIV, HTLV ? or could XMRV be unique in this way ?

My daughter who is twelve is now starting to show the same false nerve firings in her legs, and from discussion with her it seems to me to be of the same type i experiance, I think its unlikely to be genetic, because i aquired this problem at age 17 through unprotected sex.. If this problem is indeed XMRV related ( lets not forget the high incidence of this in ME/CFS patients both xmrv and muscle twitching ) then clearly the route of transmission would appear to be saliva based, if my daughter is now infected with XMRV and this nerve damage is a early manifestation of it. i had this muscle false firings for some 15 or so years before i got ill, possibly xmrv positive and in good health all that time ?

ive heard about magnesium, im more interested in the bigger picture here at present. The monkey studys, i wonder if these false nerve fireings would be missed. because i tell you, i get it bad sometimes, and a lot of people im close to do not know i have it, or have seen it, over a long period of time.

I suspect its likely it would be missed in the monkey studys. Are there any references to this in the xmrv literature does anyone know ?

I hope some find this interesting, and plausable, and possibly a very important piece of the puzzle, that is really being under discussed and regonized as a major symptom in xmrv positives,( I tried discussing this before, but not mutch was learned ) and by virtue ME/CFS patients the world over.

if im right about this, then saying xmrv is a innocent bystander is obviously completely wrong. and there might infact be evidence of quite a profound disruption to the nervouse system or brains of infected individuals, not just immune dysfunction, how many xmrv positives have this problem i wonder ?

 

[Marg]

This is very interesting. I had the twitching sensations and a feeling of a bug crawling on my legs or little electric shocks. I was diagnosed with Fibrositis, as it was then called in 1987. I did fine with 1/4 the lowest dose of Elavil for sleep. I had the most stressful year of my life in 1993 and became very sick after the flu shot in December 1993. The same doctor then called it CFS and that horrible man told me I would never get well. That was the last time I was in his office! I was in remisson for 8 years and got sick again in 2009. My immune system was a mess and Epstein Barr and HHV6 had reactivated. I never knew I had them, but it was the same drop dead flu feeling. I learned last August that I have POTS and no one got that before. I am doing better on Imunovir and I think POTS is now under control. I still have pain and the twitching. I would not be a bit suprised if the culprit is XMRV. Dr. Klimas thought it was too early to test....too many false negatives. I would test but if negative I would not be sure.

My husband's legs twitch sometimes when he is sleeping but he is very healthy. I wonder if eveyone's legs twitch a little in sleep. I have noticed it happen with dogs we have had and a cat.

I saw a study once that a lot of people with this illness have Parkinsons in their families. My grandfather had it and my uncle has it now. Is that in your family?

 

[alex3619]

Hi free at last, I am not aware of any evidence that supports this, but there is something else: now you have brought this to our attention, we will be looking. For those of us who read this thread, this is a new thing to look for. If we see a link, tomorrow, next week, or next year, we might remember and raise the issue. So even if we can't find a connection now, we still might tomorrow.

I am really sorry that this appears to be in your family. I don't intend to stop looking for answers until we are cured or I am dead or totally disabled. You aren't alone, we are a global community of very smart people. We will find the answers, I just don't know when.

Bye
Alex

 

[free at last]

Hi Marge no there is no parkisons in my family, though i did see my 16 year old daughter hand start shaking by itself one day at a birthday party, she said she had it before, but says to me it hasnt happened since, so may not be related but im unsure, And yes your right i am aware of this muscle movement in pets, my cats also do this, and its of the same type of appearance that i get, Only difference is of course this happens in a constant waking state, and never happened before i slept with this girl, confusing for sure. Alex thank you so much for the kind words and consideration, when i have discussed this with patients im absolutely astounded to find most mention it as a symptom,

Its almost like a silent symptom that most would rather not discuss untill encouraged to by others noting it also in them selves. Looking around im reading about ALS Amyotrophic Lateral Sclerosis. which clearly it is not as most become paralyzed and die within 5 years. Muscular Dystrophy also sounds too sever to be going 30 odd years with it. Spinal muscular atrophy also sounds like its to sever, though its noted some do reach old age. and severity varies depending on type, but from what im reading sounds to progressive to me i think ?
this is much more interesting and deserves further research i think ? out on a limb here ( no pun intended ) im in the dark, so much fumbling as a result is likely in understanding all this. Muscle twitching, cramp and peripheral nerve hyperexcitability (PNH). has auto immune connections, which have been discussed frequently in relation to xmrv heres a link.
http://www.pnhinfo.com/ heres another interesting one, with auto immune connections Neuromyotonia.

http://www.pnhinfo.com/neurological_rarities/neuromyotonia.html
Theres a whole host of conditions that can cause this far to many to carry on leaving links, but im trying to look at them, will take me some time. But of course where does any of this fit in with the theory of catching muscle twitches, auto immune connections may seem to be the most interesting for ME/CFS XMRV patients that have this profound muscle twitching, involutary movement or contractions. but i do belive there is a lot of ME/CFS patients with this, far more in fact than is being discussed studied ect for a connection or cause at present to be properly understood. in my case i suppose it really does depend a lot on if i actually caught this problem, which if im honest sounds very unlikely unless im right in the facts presented about the girl having similar, me developing it soon after, and her statement to me that she did similar to another person she slept with, all could be coincidence. but certainly didnt seem like that when my leg muscles started moving by themselves, so soon after seeing similar with this girl upon sleeping with her

 

[Mya Symons]

Muscle Twitching

I have not had the test for XMRV yet do to finances; however, I have the all over muscle twitching, especially at night. The twitches did not develop until a year after I developed muscle pain. About a year after I was diagnosed, my husband became sick. He also now has the twitches all over his body. Both my sister-in-laws and one of my brother-in-laws also have the all over body twitching. I think that, yes, whatever we have could be passed sexually. But, it seems as if it could be passed some other way too, such as saliva.

PS If XMRV is passed by Saliva, shouldn't our government be taking it very seriously?

One more thing I wanted to add--A lot of people with Fibromyalgia have the all over body twitches. I believe the National Fibromyalgia Association has it listed as one of the symptoms. No one knows for sure why FMS people have the all over muscle twitches. Maybe it is our post-traumatic stress (I write this sarcastically)

 

[free at last]

Thank you Mya for your account, and yes of course all goverments should be treating this as very seriouse untill dis proven to be so. I should add, saying it looks like my daughter could have got this from saliva, its also possible she was born with it from her mother, who is most likely xmrv positive. but seems to me that lately shes becoming more aware of the waking twitching in her leg, shes told me shes noticed it since from about 9 years of age, but seems to be getting stronger. im going to watch what happens with her, and if i get a chance try to see it doing it when she says it is, and if indeed its progressing to somthing similair to what i ( and others are reporting ) of course we all have to be careful here, headachs do not mean a brain tumour always. twitches do not all mean the condition im describing. i think the severity, duration and amount of the twitching should distinguish it from normal occassion trapped nerves like people get in there eyelids. this is of a order much more sever contstant, fast changing areas of the body. in a waking state. to be that simple.

Please others report connections you might have with this, i know its been discussed before, but it kind of fizzeld out into no mans land, i would like to make more concrete correlations if possible, especially if you are xmrv positive, and remember onset of twitching, after possibly unprotected sex. though of course if xmrv is saliva transmissable then a cup of coffee, or a kiss could do it. and you wouldnt even remember such a occurrance. in my case twitching came many years before illness. i wonder if others had that too ? or only illness first then the twitching started. we might be able to learn more this time around im hoping. especially if the right questions are asked
Cheers Free

 

[free at last]

This seems like a likely candidate for long term affects of this, but i do wonder if there are many different types of causation, viral being something that i cant help strongly wondering about, after my account, xmrv is so poorly understood, how would we know without correlating data ?
Benign fasciculation syndrome
our good old friend wikipedia
http://en.wikipedia.org/wiki/Benign_fasciculation_syndrome

 

[Overstressed]

Hi Free at last,

I have catched whatever virus I have, but I'm sure it's X-related, through a sexual contact too. Muscle twitching is certainly one of my prolonged symptoms. However, I doubt your daughter has catched XMRV via saliva. It think the route might rather be: you->wife->daughter

Your daughter might have catched the virus through breastfeeding. It's the main route HTLV passes to children, and I think X-related virus behaves the same way.

I just thought about this while reading Sergio's posting on his endoscopy: I had in the beginning of my illness also a few endoscopies, and of course, the doctor didn't notice anything abnormal in there, though, one thing he kept repeatedly saying: you have this twitching on your intestines. He thought it was due the stress. It's not, I think now, it's all muscle twitching!

Take care,
OS.

 

[free at last]

Thanks for that overstressed, i think the idea will either fly or fall by the patients accounts, but i have been amazed by the connection so far, just want to read about as many connections as i can, in which case maybe the idea does fly lets see.