Aa
post viral syndrome
Dear Drs.
I have seen several posts regarding post viral syndrome (which I have been diagnosed with after viral labrynthitis and viral meningitis this summer) but I have a question I don't believe has been addressed. It has been six months and I still have poor balance, dizzy, and a host of neurological sensations that every doctor says is puzzling because all MRI's, blood work and evoked response are normal. Burning skin, tingling, shivering, involuntary head movements like shaking head "no" and visual problems are just some of the symptoms. Doctor has me on Clonazepam and Zoloft to try to settle the nervous system.
I understand from what I have read in this forum ( very helpful) that it will just take time to recover. My question is, can post viral syndrome cause anything else later or permanently damage my health? And how is it that the symptoms last so long after the acute attack.
Thank you for any insight. You provide a great service.
Lori
I have seen several posts regarding post viral syndrome (which I have been diagnosed with after viral labrynthitis and viral meningitis this summer) but I have a question I don't believe has been addressed. It has been six months and I still have poor balance, dizzy, and a host of neurological sensations that every doctor says is puzzling because all MRI's, blood work and evoked response are normal. Burning skin, tingling, shivering, involuntary head movements like shaking head "no" and visual problems are just some of the symptoms. Doctor has me on Clonazepam and Zoloft to try to settle the nervous system.
I understand from what I have read in this forum ( very helpful) that it will just take time to recover. My question is, can post viral syndrome cause anything else later or permanently damage my health? And how is it that the symptoms last so long after the acute attack.
Thank you for any insight. You provide a great service.
Lori
Dear Lori:
I am sorry that you have had lingering symptoms. I am not sure if anyone can tell you for certain why some symptoms last longer in some people and not in others or why some people have the symptoms to begin with while others do not. Some of the thought is that viral infections are fought by the body by the immune system. In some people, the immune system thinks that the virus and the nervous system look alike and there is some, albeit only partial attack to the nervous system. The degree of which determines the length of symptoms and whether complete resolution occurs. The immune system itself has effects on the body itself, such as inflammation, joint pains, etc. But again, I don't think we fully understand post-viral syndrome. I hope that I haven't confused you too much.
Sincerely,
CCF Neuro MD
I am sorry that you have had lingering symptoms. I am not sure if anyone can tell you for certain why some symptoms last longer in some people and not in others or why some people have the symptoms to begin with while others do not. Some of the thought is that viral infections are fought by the body by the immune system. In some people, the immune system thinks that the virus and the nervous system look alike and there is some, albeit only partial attack to the nervous system. The degree of which determines the length of symptoms and whether complete resolution occurs. The immune system itself has effects on the body itself, such as inflammation, joint pains, etc. But again, I don't think we fully understand post-viral syndrome. I hope that I haven't confused you too much.
Sincerely,
CCF Neuro MD
Dear Lori, I have been through the same thing. I had a bad case of the flu that lasted about 9 days. About 3 weeks later all heck broke loose. I started getting veritgo, hands and feet tingling/numbess, muscle cramps in arm and chest. Since August of this year i have had the following symptoms that wax and wane.
Vision Problems (floaters,sparkles,ghost images) - i used to have great vision.
Twitching
Tingling
Leg Cramps
Hives
Rib Cage Pain
Odd Aches and Pains
Fingernail ridges
ears ringing
fatigue
loud bowel sounds
muscles that knot up
popping joints
severe anxiety,depression
It's unreal.. i used to a healthy 27 yr old male until this FLU.. or whatever it is.. I have had numerous blood tests, mri's, emg's and exams with nothing bad showing up, which im grateful, but i am still depressed i feel like this everday.
I hope one day i will feel better again.
Chris
Vision Problems (floaters,sparkles,ghost images) - i used to have great vision.
Twitching
Tingling
Leg Cramps
Hives
Rib Cage Pain
Odd Aches and Pains
Fingernail ridges
ears ringing
fatigue
loud bowel sounds
muscles that knot up
popping joints
severe anxiety,depression
It's unreal.. i used to a healthy 27 yr old male until this FLU.. or whatever it is.. I have had numerous blood tests, mri's, emg's and exams with nothing bad showing up, which im grateful, but i am still depressed i feel like this everday.
I hope one day i will feel better again.
Chris
Chris - YES YES YES. Feels so good to know we are not alone and that the range of symptoms is real. Did you actually get a firm diagnosis of anything? What, if I may ask., was your initial virus symptoms? Have all you mri's, etc. come back normal?
Did you get any Vestibular Therapy? I did and I think it helped a little.
Are you on any meds - are they helping? I am scheduled to go to Johns Hopkins in January but that seems so far down the road since this has all been going on since June. I am improving but as you do, continue to have these odd symptoms that wax and wane. have you been to any of the larger medical centers with any success? How do your doctors explain this? Have you come across any other helpful information? This site has been the best for me to know I am not alone and I'm not imagining things. I hope you will continue to improve. Oh, it has been suggested that I take a B vitamin complex. . . good for the nervous system. Check with your doctor, mabe it would help you.
I hope you begin to feel better. THANK YOU for writing.
Lori
Did you get any Vestibular Therapy? I did and I think it helped a little.
Are you on any meds - are they helping? I am scheduled to go to Johns Hopkins in January but that seems so far down the road since this has all been going on since June. I am improving but as you do, continue to have these odd symptoms that wax and wane. have you been to any of the larger medical centers with any success? How do your doctors explain this? Have you come across any other helpful information? This site has been the best for me to know I am not alone and I'm not imagining things. I hope you will continue to improve. Oh, it has been suggested that I take a B vitamin complex. . . good for the nervous system. Check with your doctor, mabe it would help you.
I hope you begin to feel better. THANK YOU for writing.
Lori
Lori, My GP thinks i have a depression/anxiety problem. My nuero thinks it post-viral and i will get better with time.
My inital virus symptoms where fever,chills,night sweats,fatigue,nausea for about 10 days.. some weeks later .. boom! hit me a like a freight train.
All of my tests have came back normal, which i am happy.
Do you have all the symptoms i have listed above? What kind of vision problems do you have?
I do feel somewhat better in the last month, but recovery is slow as you can imagine.
Chris
My inital virus symptoms where fever,chills,night sweats,fatigue,nausea for about 10 days.. some weeks later .. boom! hit me a like a freight train.
All of my tests have came back normal, which i am happy.
Do you have all the symptoms i have listed above? What kind of vision problems do you have?
I do feel somewhat better in the last month, but recovery is slow as you can imagine.
Chris
Chris, I wonder if you could have had viral meningitis. Was a spinal tap done while you were acutely ill? If your problem started with severe dixziness and vertigo, throwing up, with the other things, it could have also been labrynthitis which is how mine started and then just blew up into bigger problem.
I have several of the symptoms you list - visual disturbance - can't focus, eyes cross, can't see up close, black spot in right eye at times. Had perfect vision before this; wierd rashes - actually more like raised snake skin in a pattern on face, neck, chest; goosebumps that come at any time; freezing feet; burning skin and a feeling that someone whacked me in the head - not a headache but a hollow dizzy feeling that leves me off balance and then starts a chain reaction of involuntary body movements. My doctor says one of the systems that has been affected from the virus is clearly the cerebellum itself and has caused some fluctuations of emotion. While I do not "feel" depressed or anxious, my body is physiologically responding with such symptoms - sleep difficulty, weight loss, worry, thus the medication. Of course I do have anxiety over this just because of the duration and the unknown! It's reasonable. I am also seeing a counselor to help with the feelings of disbelief that this could happen top me a health, high energy 42 year old.
My doctor says not much is known about post viral synndrome. Much of the reading material uses chronic fatigue syndrome synonomously. While I'm somewhat tired, I don't believe I have those classic symptoms.
Tell me more.
I hope you continue to improve.
LP
I have several of the symptoms you list - visual disturbance - can't focus, eyes cross, can't see up close, black spot in right eye at times. Had perfect vision before this; wierd rashes - actually more like raised snake skin in a pattern on face, neck, chest; goosebumps that come at any time; freezing feet; burning skin and a feeling that someone whacked me in the head - not a headache but a hollow dizzy feeling that leves me off balance and then starts a chain reaction of involuntary body movements. My doctor says one of the systems that has been affected from the virus is clearly the cerebellum itself and has caused some fluctuations of emotion. While I do not "feel" depressed or anxious, my body is physiologically responding with such symptoms - sleep difficulty, weight loss, worry, thus the medication. Of course I do have anxiety over this just because of the duration and the unknown! It's reasonable. I am also seeing a counselor to help with the feelings of disbelief that this could happen top me a health, high energy 42 year old.
My doctor says not much is known about post viral synndrome. Much of the reading material uses chronic fatigue syndrome synonomously. While I'm somewhat tired, I don't believe I have those classic symptoms.
Tell me more.
I hope you continue to improve.
LP
It's been a year for me, now. I was diagnosed by a rheumatologist about six months into this with post viral syndrome. He expected that it might take a year to resolve, but that isn't happening.
I think I've had every test known to man, but not much else of interest has shown up, except degenerative disc disease that might account for some of my symptoms. I asked the rheumy if this was the same as CFS, and he said 'it's a cousin'. My PCP doesn't think it's CFS.
Not much info out there, and that adds to the frustration, I think. Hope you folks do better than I have!
I think I've had every test known to man, but not much else of interest has shown up, except degenerative disc disease that might account for some of my symptoms. I asked the rheumy if this was the same as CFS, and he said 'it's a cousin'. My PCP doesn't think it's CFS.
Not much info out there, and that adds to the frustration, I think. Hope you folks do better than I have!
Dear Joan, can we have your story? Or maybe some symptoms? Any Vision problems?
Thank you,
chris
Thank you,
chris
HI ALL,
I had a severe case of sinusitis in December 99 and Jan. 00 and had vertigo along with it, caused by a virus. I have had most of the same symptoms you discribed ever since. I have been taking Paxil since April, for the depression and anxiety and also menopause. One day you feel okay the next terrible. I hope that it goes away soon. I hope you all feel better soon also.
I had a severe case of sinusitis in December 99 and Jan. 00 and had vertigo along with it, caused by a virus. I have had most of the same symptoms you discribed ever since. I have been taking Paxil since April, for the depression and anxiety and also menopause. One day you feel okay the next terrible. I hope that it goes away soon. I hope you all feel better soon also.
Wow....I have been reading this site for 9 months now, hoping to find answers with my illness....and reading your posts here has made me feel a bit better. I guess misery loves company eh?
I had Pneumonia Jan00 and then a child virus called "fifth's disease" in March...and since then I have had the incredible and awful symptoms of burning hands, feet and face; terrible joint pain that sent me to the emergency room a couple times; a strange rash on my hands; and eye problems.
I, too, have had massive bloodwork, MRIs and Neurology testing, all within normal limits.
My doctors have made me feel like this is psychological and nothing physically is wrong.
I just want answers....and to know there will be some relief soon.
I wish you all good luck and quick recovery. Please keep us posted, any of you who find answers and relief!
Tia
I had Pneumonia Jan00 and then a child virus called "fifth's disease" in March...and since then I have had the incredible and awful symptoms of burning hands, feet and face; terrible joint pain that sent me to the emergency room a couple times; a strange rash on my hands; and eye problems.
I, too, have had massive bloodwork, MRIs and Neurology testing, all within normal limits.
My doctors have made me feel like this is psychological and nothing physically is wrong.
I just want answers....and to know there will be some relief soon.
I wish you all good luck and quick recovery. Please keep us posted, any of you who find answers and relief!
Tia
Hey Chris,
Starting on Oct 4 of this year I suddenly came down with all the symptoms you listed. I also had/have a mild intention tremor. It came on after a 3 week long "flu." My symptoms are *gradually* clearing up (its been 7 weeks now), but they come and go with good days and bad days. My GP first thought it was "anxiety" - something I've never had any problems at all with before (I am a 30yr old male). My neurologist has diagnosed me with an acute post-viral polyneuropathy, perhaps a "mild" case of Guillain-Barre syndrome. Evidently milder cases of GBS are much more common than many think and are somewhat overlooked by the medical establishment for several reasons. I know this thing I have could be much worse; nevertheless it's been hell. Your case sounds so similar to mine I wonder if we both caught the same bug. I hope you have somebody looking out for you. My wife has been a life-saver for me. Feel free to e-mail me just to talk or get some of the info I have found.
Hang in there,
Doug
***@****
Starting on Oct 4 of this year I suddenly came down with all the symptoms you listed. I also had/have a mild intention tremor. It came on after a 3 week long "flu." My symptoms are *gradually* clearing up (its been 7 weeks now), but they come and go with good days and bad days. My GP first thought it was "anxiety" - something I've never had any problems at all with before (I am a 30yr old male). My neurologist has diagnosed me with an acute post-viral polyneuropathy, perhaps a "mild" case of Guillain-Barre syndrome. Evidently milder cases of GBS are much more common than many think and are somewhat overlooked by the medical establishment for several reasons. I know this thing I have could be much worse; nevertheless it's been hell. Your case sounds so similar to mine I wonder if we both caught the same bug. I hope you have somebody looking out for you. My wife has been a life-saver for me. Feel free to e-mail me just to talk or get some of the info I have found.
Hang in there,
Doug
***@****
Dear TIA, have you improved any at all? Do you experience severe cramps in arm/chest and legs? I sure do..
Chris
Chris
Chris, I have an 'embarrassment' of symptoms, some have resolved.
In November of last year, I had a bad head cold, followed by two weeks of nausea. Right before Thanksgiving, I was having pains in the quad muscles of both legs-felt like I'd been climbing mountains. This went on for a few days, followed by vertigo, followed by severe weakness in my legs. Saw the doc then, he did some bloodwork, said I had a virus and it would be better in a couple weeks. He also made an appointment with a neuro, just in case it didn't. Saw the neuro about a month later. He thought it might be mild Guillain Barre, but ruled that out with an MRI of the brain and Cspine. He also thought it was a virus and would resolve quickly.
During December and January, I still had the vertigo, the weakness in my legs, and then the arms. Had a constant headache, sore throat, body temp was in the mid 90's. Slight rash on my neck and upper chest. Had a tremor in my hands and head. Had double vision for several hours. Lost feeling in the toes on my right foot. Was freezing all the time, and if my toes got cold, it took hours for them to warm up. Strange sensations in my legs-like there was water on them, and a cobwebby feeling on my lower legs. Also started having urine retention. Went back to neuro, he did an MRI of the thoracic spine. No abnormalities
In January, the joint pain set in. Both hips, shoulders and jaws. Also, constant pain in the tissue between my ribs. Doc did a rheumatoid blood panel-negative.
Doc sent me to an infectious disease doc, who did a second Lyme test-negative. Finally saw a rheumy in May, and he diagnosed me with post-viral, after running another 14 blood tests that were all negative.
In June, I was starting to feel better, but relapsed. Told my PCP this, and he sent me to another neurologist, who suspected myasthenia gravis or myositis, but that bloodwork was also negative. She did an EMG on my weaker leg, which showed abnormalities. Had an MRI of the lumbar spine, which showed degenerative disc disease, which was no surprise-I've had back trouble for years. She was noncommital as to whether that was causing the urine retention or my leg weakness, so I still have no answers there. She also ordered a spinal tap, but has never called with the results, so I presume they were negative.
All this, and unrelenting fatigue. I go back to bed in the afternoon and sleep like the dead for 2 or 3 hours.
Some things are better-the tremors have ceased, unless I overdo. I'm a bit stronger, but still can barely lift 20 pounds. Can't do too much walking. The vertigo, for the most part, left in June, but I continue to have gait problems due to the reduced feeling in my feet.
I've been on a bunch of anti-anxiety and anti-depressants, which seem to only make me dizzier and tireder. Had to stop taking Celebrex for the joint pains because I developed an ulcer.
Doesn't this just sound pathetic! *grin*
In November of last year, I had a bad head cold, followed by two weeks of nausea. Right before Thanksgiving, I was having pains in the quad muscles of both legs-felt like I'd been climbing mountains. This went on for a few days, followed by vertigo, followed by severe weakness in my legs. Saw the doc then, he did some bloodwork, said I had a virus and it would be better in a couple weeks. He also made an appointment with a neuro, just in case it didn't. Saw the neuro about a month later. He thought it might be mild Guillain Barre, but ruled that out with an MRI of the brain and Cspine. He also thought it was a virus and would resolve quickly.
During December and January, I still had the vertigo, the weakness in my legs, and then the arms. Had a constant headache, sore throat, body temp was in the mid 90's. Slight rash on my neck and upper chest. Had a tremor in my hands and head. Had double vision for several hours. Lost feeling in the toes on my right foot. Was freezing all the time, and if my toes got cold, it took hours for them to warm up. Strange sensations in my legs-like there was water on them, and a cobwebby feeling on my lower legs. Also started having urine retention. Went back to neuro, he did an MRI of the thoracic spine. No abnormalities
In January, the joint pain set in. Both hips, shoulders and jaws. Also, constant pain in the tissue between my ribs. Doc did a rheumatoid blood panel-negative.
Doc sent me to an infectious disease doc, who did a second Lyme test-negative. Finally saw a rheumy in May, and he diagnosed me with post-viral, after running another 14 blood tests that were all negative.
In June, I was starting to feel better, but relapsed. Told my PCP this, and he sent me to another neurologist, who suspected myasthenia gravis or myositis, but that bloodwork was also negative. She did an EMG on my weaker leg, which showed abnormalities. Had an MRI of the lumbar spine, which showed degenerative disc disease, which was no surprise-I've had back trouble for years. She was noncommital as to whether that was causing the urine retention or my leg weakness, so I still have no answers there. She also ordered a spinal tap, but has never called with the results, so I presume they were negative.
All this, and unrelenting fatigue. I go back to bed in the afternoon and sleep like the dead for 2 or 3 hours.
Some things are better-the tremors have ceased, unless I overdo. I'm a bit stronger, but still can barely lift 20 pounds. Can't do too much walking. The vertigo, for the most part, left in June, but I continue to have gait problems due to the reduced feeling in my feet.
I've been on a bunch of anti-anxiety and anti-depressants, which seem to only make me dizzier and tireder. Had to stop taking Celebrex for the joint pains because I developed an ulcer.
Doesn't this just sound pathetic! *grin*
Hello all,
I sure am glad I finally had my question posted because not only was the insight from the MD helpful but you all have made me feel better just to not be alone in this. Every doctor I've spoken to so far tells me not much is known about post viral syndrome but it sure sounds like each of you ( and me) have very similar symptoms. It does indeed seem to be a matter of time. I'm in my sixth month of waxing and waning symptoms as well as new symptoms. While it's puzzling and frustrating and dibilitating - can't wait to be able to drive - I feel some reassurance from the fact that my PCP says most case do eventually resolve and it is not known to develop into anything else.
I do hope for improvement for all of us. This is a good therapy too - talking with one another.
TIA - tell me about the rash on your hands please. I have a bizarre skin condition on temples, neck and chest. Also very interested to find someone else had the urine retention problem.
This is really a puzzling ailment. If anyone has found any other sources of info, please share.
Thanks to all for being so open.
Happy Thanksgiving,
Lori
I sure am glad I finally had my question posted because not only was the insight from the MD helpful but you all have made me feel better just to not be alone in this. Every doctor I've spoken to so far tells me not much is known about post viral syndrome but it sure sounds like each of you ( and me) have very similar symptoms. It does indeed seem to be a matter of time. I'm in my sixth month of waxing and waning symptoms as well as new symptoms. While it's puzzling and frustrating and dibilitating - can't wait to be able to drive - I feel some reassurance from the fact that my PCP says most case do eventually resolve and it is not known to develop into anything else.
I do hope for improvement for all of us. This is a good therapy too - talking with one another.
TIA - tell me about the rash on your hands please. I have a bizarre skin condition on temples, neck and chest. Also very interested to find someone else had the urine retention problem.
This is really a puzzling ailment. If anyone has found any other sources of info, please share.
Thanks to all for being so open.
Happy Thanksgiving,
Lori
Lori, for what it's worth, about the urine retention, the rheumy was puzzled by that one. I suspect that it's related to my spinal condition, but the neuro was noncommital about that, so I'm guessing.
You were asking about vision problems. I was extremely sensitive to light all last winter, that's better now. I do still see halos around lights. Had an eye exam last month and that was normal. I have spells where I have difficulty focusing on print-it's not exactly blurry, almost as if I'm trying to read through a film.
Got a weird rash on all my knuckles, too. Red and dry. Doc says it's dry skin and to use a moisturizer. Now I have red knuckles that are moisturized, LOL!
Happy Thanksgiving to you, too! I'm thankful that my brother's cooking it! :)
You were asking about vision problems. I was extremely sensitive to light all last winter, that's better now. I do still see halos around lights. Had an eye exam last month and that was normal. I have spells where I have difficulty focusing on print-it's not exactly blurry, almost as if I'm trying to read through a film.
Got a weird rash on all my knuckles, too. Red and dry. Doc says it's dry skin and to use a moisturizer. Now I have red knuckles that are moisturized, LOL!
Happy Thanksgiving to you, too! I'm thankful that my brother's cooking it! :)
Wow, this sounds like an epidemic. I, too, wonder if we had the same "virus" I have searched the net for more information regarding "post-viral syndrome" for my doctors can't give me a lot of answers.
In regards to my rash on my hands. This only appeared on my hands. I thought, as did the dermatologist at first, that these "bumps" were a "viral" wart-like syndrome. They were raised bumps, not really red, and slightly itched. They were on my fingers, palms and even a few on the backs of my hands, and they hurt to the touch. This made it difficult to do any work with my hands.
I would love to find out more information in regards to post-viral syndrome. If anyone knows of info on the site, please post in here and let me know.
I wish the best to all of you poor souls that are suffering with this as well.
Tia
In regards to my rash on my hands. This only appeared on my hands. I thought, as did the dermatologist at first, that these "bumps" were a "viral" wart-like syndrome. They were raised bumps, not really red, and slightly itched. They were on my fingers, palms and even a few on the backs of my hands, and they hurt to the touch. This made it difficult to do any work with my hands.
I would love to find out more information in regards to post-viral syndrome. If anyone knows of info on the site, please post in here and let me know.
I wish the best to all of you poor souls that are suffering with this as well.
Tia
My daughter suffered from post viral syndrome 2 years ago. The experience was a nightmare because we could not find medical personnel to acknowledge that her problems were not psychological for quite some time. She was 12 years old and had never been sick other than a common cold, but following a case of the flu she could not seem to rebound. She had low fevers, severe muscle pain in her upper body and shoulders, nausea. In time she suffered from sleep deprivation which aggravated the sympotms. We finally found a doctor who diagnosed her problem. The treatment was a tricyclic antidepressent and something for pain. In the long run, it seemed only time really helped. She eventually quit having symptoms about six months following the initial illness.
What astounds me is the number of people in the medical profession that have NEVER heard of anything like this.
What astounds me is the number of people in the medical profession that have NEVER heard of anything like this.
Hello All,
My 2 cents... I've been jackin' around with this post viral thing for two and a half years now. What a royal pain! Like you folks, I've had all of the tests and many doctors. They kept trying to tell me that I was depressed(old stand by). It seems as though some doctors have lost the idea that medicine is a science. I think that they look at diseases and abnormalities as everything that has been discovered is fact. Everything else is BS. For me, the only doctors that didn't think that I was depressed were the doctors here at the neurology forum(Thank God for this forum!) and my current doc. I found a doctor that did something that was truly against the norm. She called it,"Research"! WOW! What a novel idea! A pioneer, I say! Either way, She's not a doctor that pigeon-holes her patients. I've had most symptoms as you folks. Joan mentions that her legs are pretty well fried. As if she had been mountain climbing. Mine have been the same way. I'm assuming that it's caused either by an excess of lactic acid or the inability to remove the lactic acid quick enough. One thing that really helped is vitamin E. I take high doses, 1000iu 3 times a day, with meals. It's really helped. I tried a lower dose of 400iu 3 times and it didn't do much. Another thing that I really have to say that helped is exercise. I know how that sounds a bit rough right now, but it really helped. I am a triathlete and a former marathoner, so being tired all of the time(amongst other things) was litterally killing me. So, last year I started running again. I adopted the idea of no matter what, I would run. First it was 3 times a week then eventually I got back to training(running, biking and swimming) 6 days a week for about 16 hours. It has been up and down while recovering, but I can see my gradual improvments when I look back say... 2 months of 6 months ago. Like I said, it's been 2 and a half years and at my recovery rate, I suspect that I'm about half way through. Probably 4 to 5 years total. The information that I have found says that this nonsense can last anywhere from a day or two, up to several years. My suggestion is good nutrition, sleep and exercise. Oh, when the neurologist says that it isn't MS, I would believe him/her. They generally know it when they see it. Stress and worry doesn't help. It only exacerbates the symptoms. If anyone has any questions, I'd be more than happy to help. Just ask. We can do the email thing or set up a quick chat room.
Good luck to you all. Better days are soon to come.
Happy Thanksgiving.(for the U.S. people)
Gary
My 2 cents... I've been jackin' around with this post viral thing for two and a half years now. What a royal pain! Like you folks, I've had all of the tests and many doctors. They kept trying to tell me that I was depressed(old stand by). It seems as though some doctors have lost the idea that medicine is a science. I think that they look at diseases and abnormalities as everything that has been discovered is fact. Everything else is BS. For me, the only doctors that didn't think that I was depressed were the doctors here at the neurology forum(Thank God for this forum!) and my current doc. I found a doctor that did something that was truly against the norm. She called it,"Research"! WOW! What a novel idea! A pioneer, I say! Either way, She's not a doctor that pigeon-holes her patients. I've had most symptoms as you folks. Joan mentions that her legs are pretty well fried. As if she had been mountain climbing. Mine have been the same way. I'm assuming that it's caused either by an excess of lactic acid or the inability to remove the lactic acid quick enough. One thing that really helped is vitamin E. I take high doses, 1000iu 3 times a day, with meals. It's really helped. I tried a lower dose of 400iu 3 times and it didn't do much. Another thing that I really have to say that helped is exercise. I know how that sounds a bit rough right now, but it really helped. I am a triathlete and a former marathoner, so being tired all of the time(amongst other things) was litterally killing me. So, last year I started running again. I adopted the idea of no matter what, I would run. First it was 3 times a week then eventually I got back to training(running, biking and swimming) 6 days a week for about 16 hours. It has been up and down while recovering, but I can see my gradual improvments when I look back say... 2 months of 6 months ago. Like I said, it's been 2 and a half years and at my recovery rate, I suspect that I'm about half way through. Probably 4 to 5 years total. The information that I have found says that this nonsense can last anywhere from a day or two, up to several years. My suggestion is good nutrition, sleep and exercise. Oh, when the neurologist says that it isn't MS, I would believe him/her. They generally know it when they see it. Stress and worry doesn't help. It only exacerbates the symptoms. If anyone has any questions, I'd be more than happy to help. Just ask. We can do the email thing or set up a quick chat room.
Good luck to you all. Better days are soon to come.
Happy Thanksgiving.(for the U.S. people)
Gary
I am sorry to hear that all you people have such problems.
Did you know that Lyme Disease only starts with a rash in 40% of it's victims, but that the second symptom is a flu like symptom that doctors mistake for mono or strep or many other things and then it goes into a zillion other symptoms that come and stay for a few weeks before changing to other symptoms?
The tests for Lyme are less than 50% accurate. It is diagnosed by the symptoms and most doctors don't have a handle on what the symptoms are. Sounds like a lot of you might benifit from some reading at http://www.lymealliance.org/ or http://***************/
The disease exists in 49 states and there is a lot more cases out there than you want to know about.
I mention this because even with the rash, my son was referred to 19 different doctors in a 7 month period and no one could come up with an answer. I spent a lot of time here looking for an answer until someone like me posted about Lyme. It has taken 2 years to recover, but it is possible.
Did you know that Lyme Disease only starts with a rash in 40% of it's victims, but that the second symptom is a flu like symptom that doctors mistake for mono or strep or many other things and then it goes into a zillion other symptoms that come and stay for a few weeks before changing to other symptoms?
The tests for Lyme are less than 50% accurate. It is diagnosed by the symptoms and most doctors don't have a handle on what the symptoms are. Sounds like a lot of you might benifit from some reading at http://www.lymealliance.org/ or http://***************/
The disease exists in 49 states and there is a lot more cases out there than you want to know about.
I mention this because even with the rash, my son was referred to 19 different doctors in a 7 month period and no one could come up with an answer. I spent a lot of time here looking for an answer until someone like me posted about Lyme. It has taken 2 years to recover, but it is possible.
Gary-hurrah for you! And your doctor! You know, after a year, I'm at the point where I wonder if deconditioning is making things worse for me and I plan to attempt to resume the yoga practice that I was doing before I got sick. Don't know if the old joints will take it, but I'm going to give it a try. Hang in there!
Rae-I have talked to all these docs about Lyme disease, and the rheumy I saw was one that I got from the Lymenet list, but he didn't think that was the problem. I still wonder. The tests I had were all done while I was on antibiotics for other problems, and I've heard that that might cause a false negative. Interestingly enough, I've had dramatic reactions to antibiotics since I've been ill that sound a lot like Herx reactions. My doc just says I've suddenly become allergic to drugs I've never had any problem with before. I'm a gardener and certainly could well have had a tick bite. It's just excedingly difficult to get that diagnosis when you don't have classic symptoms. Glad your son got some help!
Rae-I have talked to all these docs about Lyme disease, and the rheumy I saw was one that I got from the Lymenet list, but he didn't think that was the problem. I still wonder. The tests I had were all done while I was on antibiotics for other problems, and I've heard that that might cause a false negative. Interestingly enough, I've had dramatic reactions to antibiotics since I've been ill that sound a lot like Herx reactions. My doc just says I've suddenly become allergic to drugs I've never had any problem with before. I'm a gardener and certainly could well have had a tick bite. It's just excedingly difficult to get that diagnosis when you don't have classic symptoms. Glad your son got some help!
Hi All. I read these posts with heavy heart...what you all have been through! I have been there done that also. I began having problems in 95, an initial episode of overall feeling sick, spleen, liver and gland pains, sore throat, and tickly crawly sensations on my skin. I continued to feel low-grade ill all 95. In 96 I suffered what was called an "acute cortical insult" -- some type of stroke like incident which left me with visual disturbances. At that same time I began to have muscle twitching, cramping, burning, aching, etc. I also had mouth sores which could not be conclusively diagnosed. I have been to around 40 different doctors searching for an answer. I have had many tests including MRI, SPECT scan, and EMGs (always normal). In April I found out I elevated levels of porphyrins in my urine and stool. However, the hepatologist did not suspect porphyria. She did say that infections can elevate porphyrins - namely Hep C, Lead, EBV, and Lyme. She ruled out Hep C and Lead. That left us with EBV and Lyme. At this point I made my way to a Lyme Literate MD. (LLMD) This is very controversial as you all might know - Lyme. There are two camps - one says treat with antibiotics for 3-4 weeks and you are done. Others say treat until symptoms are gone which can take up to 2 years. I had been tested 2-3 times conventionally. The LLMD had me do the Lyme Urine Antigen Test (LUAT) which came back positive. I have been on antibiotics since May and have experienced some profound improvements. I'd like to outline what my symptoms were - and what they are now. 10 = when they were at their worst, 0 = gone.
Fatigue = 1/2
Mouth Sores = 3
Visual Problems (dryness, floaters, light sensitivity, auras, etc.) = 5
Neuromuscular Problems (twitching, cramping, parasthesias, etc.)
= 2 (Still have mild diffuse twitching, but much better)
Headaches = 3
Sleep Disturbance = 0
Trigeminal Neuralgia = 0
Before I got treated for possible Lyme, I had made some improvements VERY VERY slowly over the course of time. But I felt like a tortoise heading for the finish line. Things I think helped: Liquid Vitamin B, Magnesium supplementation, lots and lots of sleep, keeping stress at a minimum, acupuncture (esp. worked on the trigeminal neuralgia). I am now trying an herbal Lyme protocol along with conventional antibiotics (look at www.dr-zhang.com or www.jnutra.com) and Moducare (plant steroids) for immunomodulation. I have tried many many drugs but for me effexor has been a godsend. I am still on it.
Tia - it's nothing short of criminal, in my opinion, you've been told it's "psychological." Find a different doctor! I went to some who tried to call it that too and then found others who were willing to acknowledge that no way could a person evoke such symptoms through depression or anxiety. I have had depression and anxiety AS A RESULT of being sick and not being able to get answers not the other way around!!! Lori, please let us know what happens at Johns Hopkins. There is very little research going on regarding post-viral. I wonder if anyone will ever do anything to help us.
As for my eyes, Chris, one neuro-opthamologist felt it was a brain problem, not in the eyes themselves (for example, they can see optic neuritis on exam). My exams were always normal yet the light show I live with! That would be great if my eyes could one day go back to normal, but I have learned to live with the disturbances.
For the women, my symptoms worsen and always have around the menses.
I do believe this is a cousin to GBS. I don't think it's fair we are supposed to be content simply with knowing it's not ALS, MS, etc. There were times I wasn't sure I even wanted to live - and here I was a mother of three young children 1, 4, and 7. Without the love of my family I would not have made it where I am. I would say go for the LUAT you have nothing to lose. I will never know for sure if it was/is Lyme, but I do believe I had Lyme AND Epstein Barr Virus. At the time I got sick I had almost no immune system - I hadn't slept through the night or anywhere close for up to a year, I was breastfeeding my daughter full time, getting no naps, dealing with 2 rambuctious boys the next day, no grandma nearby, etc.
Take good care of yourselves, sorry this post was so long, Maureen or ***@****
Fatigue = 1/2
Mouth Sores = 3
Visual Problems (dryness, floaters, light sensitivity, auras, etc.) = 5
Neuromuscular Problems (twitching, cramping, parasthesias, etc.)
= 2 (Still have mild diffuse twitching, but much better)
Headaches = 3
Sleep Disturbance = 0
Trigeminal Neuralgia = 0
Before I got treated for possible Lyme, I had made some improvements VERY VERY slowly over the course of time. But I felt like a tortoise heading for the finish line. Things I think helped: Liquid Vitamin B, Magnesium supplementation, lots and lots of sleep, keeping stress at a minimum, acupuncture (esp. worked on the trigeminal neuralgia). I am now trying an herbal Lyme protocol along with conventional antibiotics (look at www.dr-zhang.com or www.jnutra.com) and Moducare (plant steroids) for immunomodulation. I have tried many many drugs but for me effexor has been a godsend. I am still on it.
Tia - it's nothing short of criminal, in my opinion, you've been told it's "psychological." Find a different doctor! I went to some who tried to call it that too and then found others who were willing to acknowledge that no way could a person evoke such symptoms through depression or anxiety. I have had depression and anxiety AS A RESULT of being sick and not being able to get answers not the other way around!!! Lori, please let us know what happens at Johns Hopkins. There is very little research going on regarding post-viral. I wonder if anyone will ever do anything to help us.
As for my eyes, Chris, one neuro-opthamologist felt it was a brain problem, not in the eyes themselves (for example, they can see optic neuritis on exam). My exams were always normal yet the light show I live with! That would be great if my eyes could one day go back to normal, but I have learned to live with the disturbances.
For the women, my symptoms worsen and always have around the menses.
I do believe this is a cousin to GBS. I don't think it's fair we are supposed to be content simply with knowing it's not ALS, MS, etc. There were times I wasn't sure I even wanted to live - and here I was a mother of three young children 1, 4, and 7. Without the love of my family I would not have made it where I am. I would say go for the LUAT you have nothing to lose. I will never know for sure if it was/is Lyme, but I do believe I had Lyme AND Epstein Barr Virus. At the time I got sick I had almost no immune system - I hadn't slept through the night or anywhere close for up to a year, I was breastfeeding my daughter full time, getting no naps, dealing with 2 rambuctious boys the next day, no grandma nearby, etc.
Take good care of yourselves, sorry this post was so long, Maureen or ***@****
Hi All. I read these posts with heavy heart...what you all have been through! I have been there done that also. I began having problems in 95, an initial episode of overall feeling sick, spleen, liver and gland pains, sore throat, and tickly crawly sensations on my skin. I continued to feel low-grade ill all 95. In 96 I suffered what was called an "acute cortical insult" -- some type of stroke like incident which left me with visual disturbances. At that same time I began to have muscle twitching, cramping, burning, aching, etc. I also had mouth sores which could not be conclusively diagnosed. I have been to around 40 different doctors searching for an answer. I have had many tests including MRI, SPECT scan, and EMGs (always normal). In April I found out I elevated levels of porphyrins in my urine and stool. However, the hepatologist did not suspect porphyria. She did say that infections can elevate porphyrins - namely Hep C, Lead, EBV, and Lyme. She ruled out Hep C and Lead. That left us with EBV and Lyme. At this point I made my way to a Lyme Literate MD. (LLMD) This is very controversial as you all might know - Lyme. There are two camps - one says treat with antibiotics for 3-4 weeks and you are done. Others say treat until symptoms are gone which can take up to 2 years. I had been tested 2-3 times conventionally. The LLMD had me do the Lyme Urine Antigen Test (LUAT) which came back positive. I have been on antibiotics since May and have experienced some profound improvements. I'd like to outline what my symptoms were - and what they are now. 10 = when they were at their worst, 0 = gone.
Fatigue = 1/2
Mouth Sores = 3
Visual Problems (dryness, floaters, light sensitivity, auras, etc.) = 5
Neuromuscular Problems (twitching, cramping, parasthesias, etc.)
= 2 (Still have mild diffuse twitching, but much better)
Headaches = 3
Sleep Disturbance = 0
Trigeminal Neuralgia = 0
Before I got treated for possible Lyme, I had made some improvements VERY VERY slowly over the course of time. But I felt like a tortoise heading for the finish line. Things I think helped: Liquid Vitamin B, Magnesium supplementation, lots and lots of sleep, keeping stress at a minimum, acupuncture (esp. worked on the trigeminal neuralgia). I am now trying an herbal Lyme protocol along with conventional antibiotics (look at www.dr-zhang.com or www.jnutra.com) and Moducare (plant steroids) for immunomodulation. I have tried many many drugs but for me effexor has been a godsend. I am still on it.
Tia - it's nothing short of criminal, in my opinion, you've been told it's "psychological." Find a different doctor! I went to some who tried to call it that too and then found others who were willing to acknowledge that no way could a person evoke such symptoms through depression or anxiety. I have had depression and anxiety AS A RESULT of being sick and not being able to get answers not the other way around!!! Lori, please let us know what happens at Johns Hopkins. There is very little research going on regarding post-viral. I wonder if anyone will ever do anything to help us.
As for my eyes, Chris, one neuro-opthamologist felt it was a brain problem, not in the eyes themselves (for example, they can see optic neuritis on exam). My exams were always normal yet the light show I live with! That would be great if my eyes could one day go back to normal, but I have learned to live with the disturbances.
For the women, my symptoms worsen and always have around the menses.
I do believe this is a cousin to GBS. I don't think it's fair we are supposed to be content simply with knowing it's not ALS, MS, etc. There were times I wasn't sure I even wanted to live - and here I was a mother of three young children 1, 4, and 7. Without the love of my family I would not have made it where I am. I would say go for the LUAT you have nothing to lose. I will never know for sure if it was/is Lyme, but I do believe I had Lyme AND Epstein Barr Virus. At the time I got sick I had almost no immune system - I hadn't slept through the night or anywhere close for up to a year, I was breastfeeding my daughter full time, getting no naps, dealing with 2 rambuctious boys the next day, no grandma nearby, etc.
Take good care of yourselves, sorry this post was so long, Maureen or ***@****
Fatigue = 1/2
Mouth Sores = 3
Visual Problems (dryness, floaters, light sensitivity, auras, etc.) = 5
Neuromuscular Problems (twitching, cramping, parasthesias, etc.)
= 2 (Still have mild diffuse twitching, but much better)
Headaches = 3
Sleep Disturbance = 0
Trigeminal Neuralgia = 0
Before I got treated for possible Lyme, I had made some improvements VERY VERY slowly over the course of time. But I felt like a tortoise heading for the finish line. Things I think helped: Liquid Vitamin B, Magnesium supplementation, lots and lots of sleep, keeping stress at a minimum, acupuncture (esp. worked on the trigeminal neuralgia). I am now trying an herbal Lyme protocol along with conventional antibiotics (look at www.dr-zhang.com or www.jnutra.com) and Moducare (plant steroids) for immunomodulation. I have tried many many drugs but for me effexor has been a godsend. I am still on it.
Tia - it's nothing short of criminal, in my opinion, you've been told it's "psychological." Find a different doctor! I went to some who tried to call it that too and then found others who were willing to acknowledge that no way could a person evoke such symptoms through depression or anxiety. I have had depression and anxiety AS A RESULT of being sick and not being able to get answers not the other way around!!! Lori, please let us know what happens at Johns Hopkins. There is very little research going on regarding post-viral. I wonder if anyone will ever do anything to help us.
As for my eyes, Chris, one neuro-opthamologist felt it was a brain problem, not in the eyes themselves (for example, they can see optic neuritis on exam). My exams were always normal yet the light show I live with! That would be great if my eyes could one day go back to normal, but I have learned to live with the disturbances.
For the women, my symptoms worsen and always have around the menses.
I do believe this is a cousin to GBS. I don't think it's fair we are supposed to be content simply with knowing it's not ALS, MS, etc. There were times I wasn't sure I even wanted to live - and here I was a mother of three young children 1, 4, and 7. Without the love of my family I would not have made it where I am. I would say go for the LUAT you have nothing to lose. I will never know for sure if it was/is Lyme, but I do believe I had Lyme AND Epstein Barr Virus. At the time I got sick I had almost no immune system - I hadn't slept through the night or anywhere close for up to a year, I was breastfeeding my daughter full time, getting no naps, dealing with 2 rambuctious boys the next day, no grandma nearby, etc.
Take good care of yourselves, sorry this post was so long, Maureen or ***@****
this sounds like me. had a very bad case of pneumonia in may. took doctor over a month to cure. since them i have tmj, headaches, joint pain and now more recently tingling and numbness in arms and legs. feet cramp when walking and i have twitches and numbness on right side of face. every joint hurts, knees, hips, shoulders, etc. uncoordinated and have some loss of balance. extremely tired. gp diagnosed as fibromyalgia because of anxiety and depression but i don't know. went to neurologist, had mri, all normal. worried it could be ms but no lesions. where do i go from here. i'm just about ready to go see chiropracter. husband thinks it could be neck since i'm on computer all day and my posture is so bad. would appreciate any comments. no fever just severe muscle and joint pain plus all those other symptoms.
WOW! What a hot topic.. My GP doesn't believe in Post-Viral Syndrome's .. I think he is full of **** too.. if you search the web you find many people with the same ailments. When doctors dont know what is wrong they say anxiety/depression, if they just could admit they dont know.. well.. that would hurt their egos.
Post Viral is real. Don't let anyone tell you differently. The flu virus is a chameleon. It mutates from generation to generation. Because of this factor, each case of Post Viral is different. No two people share the exact same symptoms. Symptoms vary in intensity. Symptoms come, then go... only to be replaced by others in another category of symptoms. The deciding factor that is universal concerning this problem is that one of the many Flu Viruses CAUSE this illness.
Many GP's don't believe in Post Viral Illness because they are general practitioners. It is not up their alley. Their education is "general", thereby falling short of being something "specific". They label it "anxiety" for good reason. The word anxiety means fear... and yes we do have fear. It is fear of the unknown.
Joan from Maine? Get on the phone and call for your test results! You need an answer to that test because elevated protein levels in your spinal fluid is indicative of Guillain Barre Syndrome. Please call and don't hang up until you have an answer.
I understand all that you are going through. I had GBS. I believe in Post Viral. I know its reality... and I truly feel for you people. Good luck in the future... and realize that your lives have been changed forever.
Thanks for listening.
Many GP's don't believe in Post Viral Illness because they are general practitioners. It is not up their alley. Their education is "general", thereby falling short of being something "specific". They label it "anxiety" for good reason. The word anxiety means fear... and yes we do have fear. It is fear of the unknown.
Joan from Maine? Get on the phone and call for your test results! You need an answer to that test because elevated protein levels in your spinal fluid is indicative of Guillain Barre Syndrome. Please call and don't hang up until you have an answer.
I understand all that you are going through. I had GBS. I believe in Post Viral. I know its reality... and I truly feel for you people. Good luck in the future... and realize that your lives have been changed forever.
Thanks for listening.
You are reading content posted in the Neurology Forum
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
