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CMV and Muscle Twitching Neuropathy
Unfortunately the good doctor is incorrect.
I too had a recent CMV infection nearing the age of 40 and have undergone a whole host of neurological problems. Cytomegalovirus caused muscle twitching fasciculations, muscle spasms, heat and cold sensitivity, myopathy, aches and pains, spine pain, sleep disorders, major exercise intolerance, headaches, light sensitivity .... etc.
This went on for at least 4 months before it began to subside. Fortunately, and with zero help from any of my doctors, I was smart enough to discover that I had a recent CMV infection, and I monitored my bloodwork as the symptoms began to improve. Not surprisingly, the IGM levels (recent acute active infection) numbers were very high in the beginning, and the IGG levels (showing that you're building immunity) started low. Over time, as symptoms began to improve, my IGM (active infection) went down and my IGG (immunity) went up. Just like you'd expect.
I am currently at about 5 months post exposure and have gone through what I believe to be the worst of it. I'm much better off than I was at the 2-3 month mark. Those were the worst.
This can and does relapse sometimes before it gets better. It is extremely important that you treat your body as if you have a very harsh new infection. And take care of yourself. Do not drink alcohol, party, or run on too little sleep. Do not kill it at the gym. Begin to juice vegetables, and if you like, some Lysine daily (it inhibits herpes virus activity, of which CMV is). My doctor (only at my insistance) also prescribed me some Valtrex. It made me feel like crap, but if you tolerate it fairly well, I would suggest low dose (maybe 500mg daily) for several weeks. Valcyte is the proper antiviral for CMV but it has a black box warning that it may cause cancer. Valtrex is only marginally effective with CMV but I believe every little bit can help. This is why I also take the Lysine.
CMV when it infects the body, incorporates itself into every cell in your body. Sometimes only in certain areas. This means CMV can be seen after infection in muscle tissue, etc. It mostly gets in there and does nothing, but its a creepy thing to think about. I had major problems when I was not staying mobile. My muscles got more and more aching and painful. I finally realized that about every 4-5 days I had to go to the gym and do very light resistance training. Flex the muscles and have them push some light weight, maybe 6-8 reps. Just one set. Every muscle group. Top to bottom. This is immensely helpful in relieving symptoms for some reason. Not sure why. But if you are not active, and begin to feel extreme disability coming on, go to the gym and do this once every several days. Dont run yourself down. Just keep it going.
As for the muscle twitching? After several months of researching this I am pretty certain this is a reaction of the immune system activity. This is why there is a well known post viral muscle twitching syndrome called Benign Fasciculation Syndrome (BFS). I noticed that as I took immune boosting supplements, the twitching would go crazy. But as I just keep calm, and dont strain my body, and eat well. And let it handle this infection, the twitching was still there, but much less. As this infection has begun to resolve, the twitching has begun to calm down as well. You can keep your immune system on "hyperexcited" mode if you are not careful. And this can continue for years and years after the intial infection is gone. So be very careful not to strain or stress yourself out. It is the one thing which can keep "BFS" going indefinitely.
Bottom line? This isnt ALS. You don't have MS. You aren't going to die. If your CMV is positive, and your IGM (recent infection) is high, give it time (several months if necessary). Ignore the doctors who don't seem capable of acknowledging any exceptions to their narrow viewpoint on reality. They were of zero help to me, and said much of what the doctor above said, which reflects a total lack of awareness of the many exceptions and variability in the human body, not to mention the published studies. The older you are, the more serious of an infection it can be. I believe the original poster is older than me, but I am nearly 40 and acquiring CMV for the first time. So this is a heck of a lot different than a 7 year old getting, which seems to be the only thing Doctors are capable of referencing. In kids, its no big deal. In a 40 year old, its a very different story.
Hope this helps.
This discussion is related to CMV causing neurological issues - Antivirals?.
I too had a recent CMV infection nearing the age of 40 and have undergone a whole host of neurological problems. Cytomegalovirus caused muscle twitching fasciculations, muscle spasms, heat and cold sensitivity, myopathy, aches and pains, spine pain, sleep disorders, major exercise intolerance, headaches, light sensitivity .... etc.
This went on for at least 4 months before it began to subside. Fortunately, and with zero help from any of my doctors, I was smart enough to discover that I had a recent CMV infection, and I monitored my bloodwork as the symptoms began to improve. Not surprisingly, the IGM levels (recent acute active infection) numbers were very high in the beginning, and the IGG levels (showing that you're building immunity) started low. Over time, as symptoms began to improve, my IGM (active infection) went down and my IGG (immunity) went up. Just like you'd expect.
I am currently at about 5 months post exposure and have gone through what I believe to be the worst of it. I'm much better off than I was at the 2-3 month mark. Those were the worst.
This can and does relapse sometimes before it gets better. It is extremely important that you treat your body as if you have a very harsh new infection. And take care of yourself. Do not drink alcohol, party, or run on too little sleep. Do not kill it at the gym. Begin to juice vegetables, and if you like, some Lysine daily (it inhibits herpes virus activity, of which CMV is). My doctor (only at my insistance) also prescribed me some Valtrex. It made me feel like crap, but if you tolerate it fairly well, I would suggest low dose (maybe 500mg daily) for several weeks. Valcyte is the proper antiviral for CMV but it has a black box warning that it may cause cancer. Valtrex is only marginally effective with CMV but I believe every little bit can help. This is why I also take the Lysine.
CMV when it infects the body, incorporates itself into every cell in your body. Sometimes only in certain areas. This means CMV can be seen after infection in muscle tissue, etc. It mostly gets in there and does nothing, but its a creepy thing to think about. I had major problems when I was not staying mobile. My muscles got more and more aching and painful. I finally realized that about every 4-5 days I had to go to the gym and do very light resistance training. Flex the muscles and have them push some light weight, maybe 6-8 reps. Just one set. Every muscle group. Top to bottom. This is immensely helpful in relieving symptoms for some reason. Not sure why. But if you are not active, and begin to feel extreme disability coming on, go to the gym and do this once every several days. Dont run yourself down. Just keep it going.
As for the muscle twitching? After several months of researching this I am pretty certain this is a reaction of the immune system activity. This is why there is a well known post viral muscle twitching syndrome called Benign Fasciculation Syndrome (BFS). I noticed that as I took immune boosting supplements, the twitching would go crazy. But as I just keep calm, and dont strain my body, and eat well. And let it handle this infection, the twitching was still there, but much less. As this infection has begun to resolve, the twitching has begun to calm down as well. You can keep your immune system on "hyperexcited" mode if you are not careful. And this can continue for years and years after the intial infection is gone. So be very careful not to strain or stress yourself out. It is the one thing which can keep "BFS" going indefinitely.
Bottom line? This isnt ALS. You don't have MS. You aren't going to die. If your CMV is positive, and your IGM (recent infection) is high, give it time (several months if necessary). Ignore the doctors who don't seem capable of acknowledging any exceptions to their narrow viewpoint on reality. They were of zero help to me, and said much of what the doctor above said, which reflects a total lack of awareness of the many exceptions and variability in the human body, not to mention the published studies. The older you are, the more serious of an infection it can be. I believe the original poster is older than me, but I am nearly 40 and acquiring CMV for the first time. So this is a heck of a lot different than a 7 year old getting, which seems to be the only thing Doctors are capable of referencing. In kids, its no big deal. In a 40 year old, its a very different story.
Hope this helps.
This discussion is related to CMV causing neurological issues - Antivirals?.
thank you so much for this post!
I got the same symptoms back in January 2012 and they lasted for 5 months.. My GP did include CMV Batt (IgM and IgG ) and they came back positive..
I visited neurologist, couple of GPs and they all just told me to be patient..
Symptoms subsided and after 5-6 months I was ok
Unfortunately this winter my illness returned.. I do not know what caused it .. I started a more vigorous program at the gym a month before the symptoms reappeared and I came down with a common cold , I think those two things weakened my immune system and latent CMV became active once again
I have moved to another city and of course the GP I visited here denies it is reactivated CMV although my symptoms are more or less the same (and in same progression)
I wanted to ask you if you know anything about CMV reactivation in immunocompetent? I do not know what to expect from this disease.. if it keeps coming back like this my quality of life will be affected significantly ..
Did you try any antiviral drug? How did you persuade your GP to give you one?
I will try to go to the gym like you suggested although a couple a days ago I did try to exercise (just a bit) and it caused me a pain in my back
Did you make any more enquiries on the subject?
I can only hope that they will come up with a better antiviral treatment for this medicine since many recent researches show that this virus damages the immune sistem of the host over a long period..
I am sending you the link
http://www.prohealth.com/library/showarticle.cfm?libid=17131
I got the same symptoms back in January 2012 and they lasted for 5 months.. My GP did include CMV Batt (IgM and IgG ) and they came back positive..
I visited neurologist, couple of GPs and they all just told me to be patient..
Symptoms subsided and after 5-6 months I was ok
Unfortunately this winter my illness returned.. I do not know what caused it .. I started a more vigorous program at the gym a month before the symptoms reappeared and I came down with a common cold , I think those two things weakened my immune system and latent CMV became active once again
I have moved to another city and of course the GP I visited here denies it is reactivated CMV although my symptoms are more or less the same (and in same progression)
I wanted to ask you if you know anything about CMV reactivation in immunocompetent? I do not know what to expect from this disease.. if it keeps coming back like this my quality of life will be affected significantly ..
Did you try any antiviral drug? How did you persuade your GP to give you one?
I will try to go to the gym like you suggested although a couple a days ago I did try to exercise (just a bit) and it caused me a pain in my back
Did you make any more enquiries on the subject?
I can only hope that they will come up with a better antiviral treatment for this medicine since many recent researches show that this virus damages the immune sistem of the host over a long period..
I am sending you the link
http://www.prohealth.com/library/showarticle.cfm?libid=17131
MEDICAL PROFESSIONAL
Hello and hope you are doing well.
Understand your predicament. It could sometimes be Guillain barre syndrome. This syndrome is caused by an immune response to the nervous system. This happens with infections, surgery or vaccination. The crucial phase is usually the initial period when the body is responding to the immune effects. The person could sometimes be left with the residual defects. But the symptoms usually improve improve with time. Regards
Understand your predicament. It could sometimes be Guillain barre syndrome. This syndrome is caused by an immune response to the nervous system. This happens with infections, surgery or vaccination. The crucial phase is usually the initial period when the body is responding to the immune effects. The person could sometimes be left with the residual defects. But the symptoms usually improve improve with time. Regards
Apparently my "Continue Discussion" didn't work. I was replying to something in another thread. Here it is:
http://www.medhelp.org/posts/Neurology/CMV-causing-neurological-issues---Antivirals/show/1025990
http://www.medhelp.org/posts/Neurology/CMV-causing-neurological-issues---Antivirals/show/1025990
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