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Neurology (Expert Forum)
MS Symtpms for 12 Years, Clear MRIs & LP
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MS Symtpms for 12 Years, Clear MRIs & LP
by mcg99, Feb 13, 2007 12:00AM
I am a 32-year old female, and have been having MS-like symptoms for 12 years. They started off mild, as tingling and numbness in a few fingertips, a few toes, and a mild l'hermittes sign, which re-occurred annually. I have had six sets of MRIs of brain and spine at 2-year (and now yearly) intervals--all scans have been clear. My LP, which I had this past January, was clear, as well. Two years ago, my symptoms worsened, and now I have sensory symptoms often, as well as crushing fatigue that comes and goes.
I have seen two excellent MS Specialists, both of whom believe I have "mild" or "benign" MS. Neither of them advocate treating me with interferons or Copaxone, as they believe the side effects will make me feel worse than I already do. Both neurologists have speculated that they believe I will stay mild "forever," due to the history of my symptoms. I am very scared about slowly losing myelin and not doing anything about it--I do know people with MS who were mild for many years, only to later suffer a disabling attack. Plus, I am getting worse slowly.
Do you think I should be on meds?
Do you agree with my specialist's predictions that wills stay mild, or do you find this approach a bit reckless?
Thank you so much for your time.
I have seen two excellent MS Specialists, both of whom believe I have "mild" or "benign" MS. Neither of them advocate treating me with interferons or Copaxone, as they believe the side effects will make me feel worse than I already do. Both neurologists have speculated that they believe I will stay mild "forever," due to the history of my symptoms. I am very scared about slowly losing myelin and not doing anything about it--I do know people with MS who were mild for many years, only to later suffer a disabling attack. Plus, I am getting worse slowly.
Do you think I should be on meds?
Do you agree with my specialist's predictions that wills stay mild, or do you find this approach a bit reckless?
Thank you so much for your time.
Doctor's Answer
by CCF-Neuro-M.D.-SH, Feb 24, 2007 12:00AM
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 that you describe are non-specific, but similar symptoms are often decribed by people with 'mild multiple sclerosis'. However, patients with 'mild MS' often have brain scans with more lesions then they have symptoms for (because every site in the brain does not give rise to a recognizable symptom). Given that you have had 6 MRIs and a lumbar puncture that were 'clear', suggests that your symptoms may may be caused by an alterantive diagnosis other than MS. From the data that you have described I do not have any indication that you are in fact losing myelin. There are some more tests that you should have done (if not done already) that may help support a diagnosis of 'mild MS' in the setting of 'clear' MRIs such as a visual evoked potential (will assess for any past occurance of optic neuritis), somatosensory evoked potential (to look for functional problems in the 'wiring' of your spinal cord-which can be affected by the inflammation that results in a l'hermittes sign) and an ophthamologic exam (to look for signs of optic atrophy). Given the data you have presented, I can not explain the progressive course of your symptoms, but it does not seem to be due to MS (based on the clear MRIs). Thus, I would agree with you doctors that starting interferons/glatimer acetate at this time would not be indicated since these medications do have side effects and would not be of any proven benefit (these drugs are only proven to help patients diagnosed with MS by traditional clinical/MRI criteria-which you do not meet). What I would suggest is that a definite diagnosis for your problems should be made. There are many causes of fatigue and multiple sensory symptoms including vitamin deficiencies, depression, migraine, collagen-vascular disorders, etc. and these possibilites should be assessed.
I hope this has been helpful.
The symptoms that you describe are non-specific, but similar symptoms are often decribed by people with 'mild multiple sclerosis'. However, patients with 'mild MS' often have brain scans with more lesions then they have symptoms for (because every site in the brain does not give rise to a recognizable symptom). Given that you have had 6 MRIs and a lumbar puncture that were 'clear', suggests that your symptoms may may be caused by an alterantive diagnosis other than MS. From the data that you have described I do not have any indication that you are in fact losing myelin. There are some more tests that you should have done (if not done already) that may help support a diagnosis of 'mild MS' in the setting of 'clear' MRIs such as a visual evoked potential (will assess for any past occurance of optic neuritis), somatosensory evoked potential (to look for functional problems in the 'wiring' of your spinal cord-which can be affected by the inflammation that results in a l'hermittes sign) and an ophthamologic exam (to look for signs of optic atrophy). Given the data you have presented, I can not explain the progressive course of your symptoms, but it does not seem to be due to MS (based on the clear MRIs). Thus, I would agree with you doctors that starting interferons/glatimer acetate at this time would not be indicated since these medications do have side effects and would not be of any proven benefit (these drugs are only proven to help patients diagnosed with MS by traditional clinical/MRI criteria-which you do not meet). What I would suggest is that a definite diagnosis for your problems should be made. There are many causes of fatigue and multiple sensory symptoms including vitamin deficiencies, depression, migraine, collagen-vascular disorders, etc. and these possibilites should be assessed.
I hope this has been helpful.
I too, have varying neurological symptoms - I'd say I have something happening on 95% of all days. What happens on any given day varies, and the duration of that symptom varies. E.g. a tingly feeling at a small spot on the rim of my left nostril for a few minutes, 5 times a day, for 6 days. Then maybe a vibration in the arch of my right foot that pulses on and off every 4 or 5 seconds for several minutes maybe 4 times in a day. Usually, whatever happens one day happens the next and continues to happen for several days or even a week or more before finally not happening again. Then the next week, it is something else. E.g. last year, I had a few small tingly spots on my scalp above my left ear on a total of maybe a dozen days, but it has been months since I felt that one. I am trying to find someone that has had similar symptoms over years to tell me how it ends up.
Good Luck!
JCmcc.
Well, you sound VERY similar to me--I now have some kind of sensory issue going on most days, just as you described. Occasionally (like last week), I will have terrible fatigue for days at a time and an increase in sensory symptoms--I consider these flares, and they've been happening every few months for 2 years now. Before that, I never had fatigue and simply had mild tingling/numbness ONCE/year for a few weeks at a time.
Did you say you were diagnosed? Are lesions showing up with your symptoms? Do you have fatigue?
I have been tested for Lyme (I grew up in CT, am now in Seattle), as so many people I know from CT do have Lyme. I have been to 2 good infectious disease specialists, both of whom ran the standard tests and dismissed Lyme. I truly know that the standard blood tests are unreliable, but I have thoroughly investigated Lyme (and read your posts on this board) and don't think my symptoms align.
Also, for a trip to Africa a few years ago, I was on a high dose of Doxycycline as an anti-malarial for two months, and it had no impact on my symptoms whatsoever.
But thanks for the thought.
I've been having severe/constant sensory symptoms for almost 2 years straight - including L'hermitte's, wobbly/unsteady legs, numbness in legs/feet, raw/burning skin everywhere below my head, etc. - and no sign of MS on several brain & c-spine scans; been "treated" for Lyme for 6 months to no avail; saw an MS specialist who doesn't suspect that it's MS (I, however, am nearly convinced I do have it - does that mean I don't trust my doctor?). Anyway, do you or your docs have ideas on anything else other than MS? I mean, by definition, MS means "multiple scars" (as I'm sure you know), and if you don't have any over 12 yrs time, why do they stick you with this dx? Does "benign" MS not entail lesions/plaques?
mcg99, my neuro said she doens't think I have MS, because most of my symptoms last only for a few seconds/minutes, sometimes "travels" around, and changes all the times. But she also said if I have it, nothing was going to change because she wouldn't recommend any drug based on the same explanation both your doctors gave you.
Can you tell me how sure your doctor is about MS? How come your LP is normal? I've heard about normal MRI, but not normal LP (I didn't have one yet and confess I'm scared to death to have one).
The only difference on my symptoms is the fatigue (had it once, but pretty sure was due to the beta clocker I started taking), and I have an abnormal feeling on my forehead and scalp (on side) all the times. Sometimes it's worse, sometimes I almost don't feel it, but it is always there. It's like if there was something under my skin, that makes it stiff.
I was negative for Lyme, but sometimes I get myself thinking about it. The thing is that I don't feel terrible ill, and seems that this is frequent in Lyme disease. But all those "weird sensations" can be very disturbing. There is always a ghost saying, well, what's next??
In my last post the doctors suggested it could be migraines (never had a really bad headache, but seems that you can have migraines without pain).
Anyway, only hope we can learn what is wrong with us, this is the worse part, not knowing!
All the best.
At UCSF MS center in San Francisco super-world-famous specialist said "you do not have MS", and looked at me like I was crazy
I am NOT crazy, but my nerves are!
brain