MS Symtpms for 12 Years, Clear MRIs & LP

[mcg99]

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.

[CCF-Neuro-M.D.-SH]

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.

[mattsnow71]

Take mild if you can get it! Please define "often"
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.

[JCmcc]

Depending upon locale (unless you travel) it could be Lyme disease, et al.

Good Luck!
JCmcc.

[mcg99]

Hi there;

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?

[mcg99]

Hi;

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.

[patsmad]

Hi,
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?

[rcs2]

I'm pretty much in the same boat... Having sensory symptoms for about 2 years...

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.

[mattsnow71]

Neurologist with >30 yrs experience told me "you're not an MS patient, but I am not saying that you don't have it", but he gave me the impression that he thought i was crazy.
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 MRI 2005 - clear
C-spine MRI 2005 - clear
brain MRI 2006 - clear
UCSF people said that there were some "headache-like spots on the brain MRI" - I have a long history of migraines during childhood, so that could be it...wondering if it could also be mild MS. Have a brother with a very classic case - started for him at 42 with double vision, left side paralyzed, lots and lots of spots on brain MRI, he's on drugs. (I am now 45)

For me, things are mostly mild - usually feels like an individual nerve is disturbed - a fine hair laying on a finger, gentle downward pressure on the tips of toes (imagine a sock stuck on your toenail) -- had week-long incident of left calf sort of vibrating in 2005 - very disturbing  - often have vibrations or fasciulations on small patches of leg

Never had the fatigue thing - no L'hermittes, no hot shower problems

Have been very frustrated with typical symptom descriptions and the lack of description of anything that preceeds those catastrophies - is there a buidup from small stuff like this to the day when you finally get nailed by the big stuff?

Thanks for sharing.

[JCmcc]

I did grad work in CT, but, contracted Lyme disease in WA and I too live in Seattle. There is one physician in Seattle who knows anything about Lyme disease.

If you feel comfortable with what you have found and are no longer thinking it could be Lyme disease well then I am happy that you do not have an alignment with it.

Good luck in finding the cause of your symptoms.

JCmcc.

[mcg99]

I also had specialists tell me I didn't have it (including a doc at the Cleveland Clinic back in 1999, but over time and after a decade of this pattern, they now believe I do.

I really have a lot of empathy for the question you're asking--"how can we tell if/when it's going to get bad?"

Unfortunately, there really is no way to know. If you look at the National MS Society's home page, there is an article from 2/13 that shows how many people stay mild over many years, while others transition to having severe disability, with no predictors. Ack!

Also, my sister (she's 36, I'm 32), does have some VERY mild sensory symptoms like you describe--a hair brushing skin, that pressure feeling--but she isn't pursuing any kind of diagnosis because it is almost unnoticeable. I suspect she has an ultra-mild form and I have a slightly worse form--as siblings are most likely, among families, to share this illness.

My symptoms started much like your and remained SO mild, with no fatigue, for 10 years--it's just the past 2 that have been worsening. Still, all tests are clear. I think you are doing the right thing in staying in touch with a neuro and getting monitored perhaps annually, or even every two years. Keep in mind that you might have another decade or even a lifetime of very mild symptoms, and that lesions may never show, putting you in that "almost, kind-of ms" catagory that can only be diagnosed on autopsy.

If i had to offer advice (which I know you didn't ask for!) I'd say try to live your life and don't let fears of MS consume you. I spent my first three years of symptoms fetal and neurotic with worry and seeking concrete answers, and many years later the "answers" are still not concrete. To try to have come control over my health (which is know is kind of an illusion, but it helps), I practice yoga and meditation, follow and anti-inflammatory diet and take supplements that may be beneficial, and take an anti-depressant to help cope. I also try to stay up on all the clinical trials to keep hope that there WILL be a cure or at least a very effective treatment one day in the not-so-distant future. If you are feeling really bummed or anxious, google "Tovaxin" and read about this amazing treatment option which is in Phase IIb trials--it looks so promising.

Well, I have babbled enough! I'll stop now.  :-)

[mcg99]

Hi, how interesting that you're also here in Seattle. Would you mind telling me the doc who knows Lyme here? While I am pretty confident I have MS, I certainly will not rule out the possibility that I could one day want to pursue the Lyme possibility, especially if tests continue to be clear. Thanks!

[LPNStudnt2007]

Hi all,
I know how everyone on here feels... I used to post on here a couple years ago over my neuro symptoms under a different I.D. I never got any answers, and got sick of researching. However, my symptoms seem to be bothering me a little lately, so I figured I`d post again. I`m a 26 yr. old female from VA. After I had my daughter in `02 I started having neurological symptoms. I started having tingling and numbness in my hands and feet, electric shock sensations that would go through my body, and I began to twitch all over. I had lots of testing done, including brain MRI`s & all came back as normal. I`ve seen several doctors including neurologists, and no answers. One neurologist said it could be MS, but anything is possible, no diagnosis. All of my symptoms have almost cleared up, except the inside part of my left foot near my ankle gets numb sometimes. I also twitch all over from the waist down daily, and I have an overactive bladder, and recurrent urinary tract infections. I`m a nursing student, so I know this isn`t normal. I`m getting so frustrated w/ all of this... Any other ladies out there w/ similar problems? Thanks

[JCmcc]

Hello,
I will not post his name on here, however, if you want to shoot me an e-mail I will be happy to speak to you and to refer you. Lyme is a sensitive and often dangerous topic for medical doctors.
  ***@****

JCmcc.

[lat67]

Wow...I feel I must give my two cents worth.

I have had all of these symptoms for the past three years.  I have been seen by an MS specialist here in Canada who says its not MS.  I have had 4 MRI's done with contrs=ast, evocked responce, EMG and a Lumbar Puncture.  All were normal.  I went to the Boston MS clinic and had every test possible done for MS...the MS neuroligist said it is not MS.  I have also seen one of Canadas leading researchers in MS who says "clearly not MS".
I was finally diagnosed with Lyme disease and am going to the States for treatment.  I have been on anti - biotics now for four months and am starting to get better.
Lyme disease can only be tested at certain specialized labs and most doctors dont see it as a possibility.  I believe in about ten years from now doctors will start believing that these mystery illness's are indeed Lyme disease.
I wish everyone good luck in finding some answers.

If anyone wants information on Lyme disease feel free to email me.

***@****

Lesley

[Annie62]

Mcg,

Why do your doctors think you might still have MS if both your brain/spinal MRIs are consistently negative and your LP was negative?  I'm not implying you don't have it, just that I was wondering what their logic was.  I was under the impression that negative brain/C-spine MRIs and negative LP ruled out MS.  I have had negative brain/C-spine MRIs and am going for an LP next month.  Neuro wrote me that she thought if LP was normal, too, then MS could safely be ruled out as a diagnosis.  It will be interesting to see what the CCF doctor says on this, that is whether negative brain and spinal MRIs plus a negative LP absolutely r/o MS.

[mattsnow71]

I will have an MRI every 2 years and monitor with UCSF.

A question on fatigue

[mcg99]

Annie:
My MS specialist believes this is MS due to my classic and long symptom history of intermittent numbness, tingling, L'hermittes sign (which is VERY classic MS), bladder issues, and fatigue, plus the fact that I have been tested and retested for everything else. She has said "You cannot rule out MS with tests." There is really no way to ever definitively rule it out....I sought a second opinion with the former director of the cleveland clinic, and he agreed. There is a certain percentage of people with MS who don't fit the "McDonald Criteria," used for dx'ing, but that doesn't mean we don't have MS. Also my docs have said that MRIs are not the end-all be-all of testing, and that the spine, especially, is very difficult to image accurately. So, my doc assumes I have lesions (esp. in my cervical spine) that are too small to detect at this point, but are symptomatic. She has also said that many people with MS have clean LPs, and that they are a poor measuring tool--unless you are in a really bad flare, often they will come back negative.

MattSnow, I can tell you quickly here about non-inflammatory diet stuff, and its not easy! First, you must get tested for all food allergies and find out what you react to (I was shocked to learn that I was allergic to soy, for example, which I ate daily). A blood test is good for this--often, we do not have any digestive symptoms of things our immune systems are reacting to. Next, eliminate all these allergens from your diet, along with common allegens like dairy and sometimes gluten. I take a lot of anti-inflammatory supplements, too, like cod liver oil, turmeric capsules, quercetin, bromelain, vitamin c. VERY low sugar is important, too, and eating less than 15 grams of saturated fat daily. If you google, you will find much more info. I do really well on most days and fall off the wagon on others.  :-)

[Annie62]

I know some people with definite MS have negative lumbar punctures, but I wouldn't consider it a poor tool for diagnosis considering most people with MS have abnormal lumbar punctures.  Also, I think it's the myelin basic protein that fluctuates with exacerbations, but I don't think that is true of the IgG levels or oligoclonal banding patterns; I think, if I remember correctly from what I read, that the oligoclonal bands are pretty consistent throughout the course of the disease, not fluctuant.  Anyway, it's a question that I am sure many would like an answer too-does having both negative brain and spinal MRIs as well as negative LP exclude the dx of MS or can a very small percentage an exception to the norm?  I know about 5% or so of those with MS have negative MRIs.  Hope the doctor gives us his/her thoughts on this.  

[patsy10]

I have the symptoms you and others describe but they sound much more severe than what you describe.  I have constant, whole body, daily numbness, tingling, twitching, muscle and nerve pain-severe.  I have had all negative tests as well, including LP.  I have seen 4 neuro's including CCF MS specialist who agreed it was not MS.  All four of them said not MS. MS specialist said FMS/CFS.  Of course, I don't believe this.  I think it's something.  I just don't know how they can say MS with negative findings.

[mattsnow71]

How long have you had your symptoms?

Has there been a gradual buildup?

[rcs2]

Hi there,

I have a question for you. As I mentioned before, I am having symptoms similar to yours for 2 years now.

We are about the same age, so I was wondering if you have had kids since your symptoms started. I don't have children, but my husband and I think about it. The last appointment I had with my neuro I was feeling great (it lasted for less than a week...), and she asked me to prevent any source of stress (as if this was possible), including pregnancy. As I have been really stressed with all this, I didn't think about it. But now I realized that I probably will have to lear how to live not feeling 100%, maybe this will be my 100%.

To be honest I am kind of scared to put my life together again, the last 2 years have been really stressful. Right now I don't have a very demanding job, but I might start grad school this fall and it's funny the things that come to my mind. My husband asks if I worry about the courses, but I don't think about it... I worry if I will feel well enough to keep going. I think if I will find out what I have and won't be able to afford all the costs after leaving my job. And than I feel crazy because I am concerned about things that might never happen. A ghost...

Sorry for the long post for such a short question...

All the best,

[patsy10]

What happened to the rest of the comments.  I can only see 1-3?

[patsy10]

My symptoms came on suddenly in 5/05.  At that time I had sudden leg weakness and onset of paresthesias from neck down.  I had neck pain too.  I was told that it was a herniated disk and i had surgery.  A few days after surgery is when it hit big time.  Numbness, tingling, twitching, weakness, blurred vison, floaters, even lactation etc...I could hardly walk.  Four months later all the nerve and muscle pain started and has never let up.  My legs aren't as weak and my hyperreflexia has settled down but the numbness, pain, twitching has not gone away.  It varies in intensity from hour to hour, day to day but never leaves.  So, it was sudden and never went away.  I also had a similar syndrome back in 1993 after bullseye rashes...I had fever, flu-like symptoms along with all the neuro stuff as well.  It resolved after about 5 years.

[robertmillerfoundation.org]

I am sorry you are having trouble finding answers, as I too was in the same boat as you for the longest time.  I am no medical expert but I believe I speak for everyone here (correct me if I'm wrong), but normal scans and LP are very encouraging, and I think you should take this to heart and keep your chin up - worrying is not good medicine, as I learned the hard way.  The best approach to things is to keep living your life and enjoying it as you can, as the odds are definately in your favor of never developing a severe illness and I hope you will realize this sooner than later.   I would however keep following up with a Neuro, preferably at a teaching hospital.   Get well soon  :)