I am a 39 year old female who has been sick for three years now with what seems to be a mystery illness. Prior to be ill I was trainning for a marathon and exercised everyday.
August 2003 I came down with swollen glands and crushing fatigue which lasted for about 4 weeks. Then in Nov. 2003 it came back, this time with crushing fatigue that lasted for 6 weeks. The fatigue was so bad I could not move off the couch and barely ate. After six weeks it went away and I was able to get back to my running and execise. For the next year i did a lot of running but did notice I was tired at night.
November of 2004 it hit me again. This time much worse which pin ***** sensations in my feet, legs and hands. I also started having muscle twitches constantly all over my body. My legs felt heavy.
I went to the Boston Leahy Clinic and had the following tests done by a Neuroligist. MRI of brain and spine (neck)with contrast, Evocked response, EMG and Lumbar Puncture. All tests came back completely clear of anything and no evidence of MS.
I have had two other MRI, and an MRA which have showed nothing.
It is now Sept. 2006 and i still have severe fatigue, very weak legs...yet no loss of actual strenght. My muscles twitch randomly all the time especially at night. I also have jerking in my legs and arms.Patches of Numbness which travels all over my body. I can not tolerate any exercise.
My questions are:
Do you think I need to be re tested for MS ( another LP)?Were my tests done to early?
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms you describe are concerning for lyme disease. You did not mention where you live, but I assume the North East (lyme endemic) since you attended the Boston clinic. Training for a marathon is also an easy way to get a tick bite. Lyme can present exactly as you mentioned and causes a vasocontrictive disease in the brain that results in transient dysfunction, with/or without MRI lesions. First I would recommend a trial on antibiotics (ceftriaxone, doxyclycline etc) and testing for lyme antibodies (IgG and IgM) and Lyme PCR from the cerebro-spinal fluid. I would also recommend a SPECT scan of the brain to evaluate for the vasocontrictive disease. I would find a Lyme litterate neurologist and pursure the possible diagnosis of lyme (which can be tricky and frusterating). As far as MS is concerned you seem to have had a fairly comprehensive workup and I would not suggest further tests unless new symptoms develop. Another possiblity is a post viral syndrome/ post encephalitis syndrome. For this I would recommend an EEG (electro-encephalogram- or "brain-wave test") and viral titers (by PCR) of EBV, CMV, arbovirus, west nile, etc of the cerebro-spinal fluid.
I hope this has been helpful.
Thanks for your comments on my posting. I actually do have a clinical dx of Lyme and am on one anti-biotic. I will start the second one next week.
Because there is much contraversy surrounding Lyme disease, especially here in Canada, I keep worrying about MS.
I am very hopeful that with proper treatment I will be able to get my life back on track.
Do you have lyme disease? If yes are you being treated?
sorry about whats going on. i know the whole mental aspect of this. i have been suffering for 8 yrs without knowing the cause. have had all test imagniable. two little kids. i know the kids makes it more hard on the mental state because we feel guilty about taking rest from hurting.
anyhow i have a lot of muscle twitching and stuff too. my lyme so far negative but i did live in connecticut whe all this started and you know its the tick state so
Ihave similar symptons beginning with a severe inflammation in my sternoclavicular joint in 2004 of unknown cause sed rate in 80's went to ortho/neuro tested for everything under the sun. Lymes about 8 times even western blot igm igg and so on I had steroid injections which resolved the inflammation but the shoulder has never been the same.Soon after i developed weak legs fatique and ultimately depression as i am an active nurse and mom of three I had no objective weakness but had MRIs of brain neck lower back all normal,emgs normal.I was well for about 8 months and now have developed symptons[feeling of leg weakness, arm weakness, twitching] worse this time again. I am interested in knowing from people posting about lyme disease that with all these negative tests did anyone actually have lymes? I'm beginning to think it is all in my head and i actually posted on the mental health aspect of this MHI.
I have the same things you describe. I have intermittent left sided weakness and pain (perceived weakness) the neuro's say my neuro exam is normal. I've had all the MS tests from MRI's to spinal tap, all normal. I have a history of bullseye rashes. I'm a nurse too. It's definitely not all in your head. Don't let them tell you that.
thanks or your post. If all your testing is normal are you still seeing docs to fiqure it out Is lymes negative. do you get cramping and twitches as well.I dont like to think its stress but everything keeps coming back normal.
Yes I get cramping and twitches all over the place. I have all sorts of muscle pain. The areas actually hurt to touch. It NEVER goes away. I don't know if we will ever get an answer for sure. That's the hard part. I've seen 3 general neuro's, a neuroimmunologist at The Cleveland Clinic Mellon center for MS, a rheumatologist who told me it was fibro but never checked me for the tender points. It's just so awful, every day is a surprise. I will keep on searching. I clearly have lyme symptoms, had the rash etc...but no regular doc will treat you without a positive test. I will continue to search as I refuse to live like this with no answer.
It is all so frustrating because I have been told it could be fibromyalgia but noone ever checked for tender points either. but mine is more twitches muscle cramps and percieved weakness. Although with season changes i get this terrible deep ache in my legs. I am to see a different neuro friday and i still fear ALS so i am really nervous.
Thanks for that tip. After reading this board, I too looked into more information on lyme. However, I don't know how well I fit that profile. Over the last 4-5 years, I've only lived in large metropolitan areas (nova, southern cali, dallas) and am not much of an outdoor/nature person. Also, I read through the list of symptoms in that Canadian lyme site and my problems seem pretty isolated to what I described in the above message. The psychological symptoms (loss of energy, sleep, etc) also coincided very neatly with a series of major stressors.
I'm wondering though if I did want to be checked for lyme, how would I do that? Is it usually done by a neurologist? Right now I live in southern cali, and belong to kaiser -- so I doubt think the doctors there are very well-versed in lyme.
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