MS Symtpms for 12 Years, Clear MRIs & LP

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  :)

[JCmcc]

I recommend Low Dose Naltrexone (LDN) for you. Google it.

I do agree that you should be protecting your central nervous system and I believe that LDN is the best answer in your written case-if all the facts are in.

Please be reminded that I am not responding to you with medical advice nor as a representative of this website.

Good Luck!
JCmcc.

[mcg99]

Hi JCmcc, thanks for the info....I have actually researched LDN extensively, and have been thinking about trying it for some time. My neuro even said she'd presribe it, though reluctantly, because she says there's no hard proof it works for MS. However, I am in touch with many people with MS who have had much success with LDN.

Most say the problems LDN has addressed, however, have been bladder issues and spasticity, not sensory symptoms or fatigue, which are my main problems.

You say it helped your sensory symptoms? This is encouraging. Thanks!

Also: to the woman who asked if I had kids--I haven't, and don't plan to, so that question doesn't factor into my treatment decisions. I do know, however, that post-birth is a frequent time for MS (and other autoimmune disease) flare-ups to occur. Good luck!

[wifeataloss]

For SEVERAL years (and I can't stress the SEVERAL enough) my husband has been having bizarre neurological symptoms.  They began when we were living in Texas while he was attending seminary.  Things have progressed and worsed over the years and we seem to constantly get nowhere with family doc, neurologist, rheumatologist, etc.  I am going to list a short summary of the issues and explain what we have been told.  If anyone can point me in a direction PLEASE let me know.

1) diagnosed with Fibromyalgia because of consistent body pain
2) began having severe migraines
3) later during the time of a migraine, his right I would close and the right side of his mouth droop (just like Bell's Palsy).  
4) after a while of these episodes, ENTIRE right side of body would go numb.  Sometimes it will last a day, sometimes a week, sometimes MONTHS.
5) these episodes do sometimes occur immediately after ejaculation.

Family practice doctor has done CT, MRI, Carotid Artery studies, lumbar punctures, etc.  All show negative for most major disease.

FP Dr says now "Hemiplegic Migraines" and it is impossible to tell when they are going to come on, cannot treat the hemiparesis once it begins, etc.  Neuro says it's not that but doesn't say what it is.

My thoughts, based on HOURS of reading are: MS, Lupus, ALS, or Myesthenia Gravis.  His maternal grandfather did have MG.  

My husband is actually in the hospital right now with the symptoms.  The doctor ordered yet ANOTHER MRI and carotid study.  I found a blood test that can be done for MG so I am going to request that they do it while he is in.  I will be checking this board tonight and tomorrow so if ANYONE has ANY ideas, similarities, places to begin, etc. PLEASE let me know.  As my login says I am a wifeataloss!!!!  We are going on 9 years of this and basically getting told NOTHING!  And we haven't even used the same doctors this entire time!

[JCmcc]

LDN's effects are more exstensive than the prior. I have seen many cases where it takes complete control of the body. It does not work for every patient.

I hope that this has been helpful.

JCmcc.

[JCmcc]

I am not responding to you as a physician and please be advised that I do not represent a professional opinion nor do I represent MEDHELP.ORG

With that said. Your husbands symptoms are consistent with Multiple Sclerosis, however, studies indicate the he does not have MS.

I am more apt to consider a viral infection, perhaps a small and nearly benign (in comparison to others) acute transverse myelitis induced by a tick borne illness such as the much more common than realized Lyme disease. He too may have MG.

I understand that this is a terrifying process but you need also to be aware that certain poisons, such as arsanic poisoning, can cause all of the symptoms your husband is having. Such a poisoning is highly unlikely. I have, however, read of cases where such symptoms came upon a patient, baffled physicians, and nearly lost their lives until such tests for poisons were taken.

The point is: until all facts are in, an answer, is simply a guessing game. You are in line with all of your differential possibilities. I would go to a major academic center for evaluation.

I hope that this has been helpful and good luck to you two.

JCmcc.

[tory2457]

If I may offer what I've experience personally:

I do have a MS diagnosis...for 20 yrs.

I began to read and educate myself regarding the similarities between MS/Lyme.

I then sought out a "lyme literate doctor". He tested me for things like full blood work up, Western Blot, and MRI's.

I am now treating with antibiotics.

Although I tested negative on my Western Blot per CDC criteria, I have numerous bands that are both PosiTive and IND...

Lyme disease just like MS is a Clinical Diagnosis...!!!!!

I would advise all to read and get educated about lyme and how it mimics all kinds of diseases,,,MS, Fibromyalia (fibromyalgia) to name a few.

The best,
tory

[JCmcc]

I-100% agree.

[tory2457]

I'm very new here, so I don't know who you are...but I do notice you post quite a bit; so, thanks for the comment. Us "lymie's" are conveniently looked at as fanatical zealots with nothing to offer society!

BTW, are you aware of the ABC Primetime Special that is supposed to air in the next month or so?

The title is Chronic Lyme as it pertains to ALS & MS. Jay Schadler is the host.
One of the men who has a MS diagnosis, was bedridden heading for a nursing home, was interviewed along with his doctor for the show. After seeing over 10 neurologists he continued to search out information, read about the lyme-ms connection and began treating with Antibiotics and states in 8-9 months feels 90% better. He's functioning as well at that rate.

Perhaps you can help spread the word about this upcoming special.

tory

[Annie62]

Tory,

You said you had an MS diagnosis for 20 years.  Does that mean that you no longer believe you have MS or that you believe you have both MS and Lyme disease?  Does your doctor still believe you have MS?  Also, how was your MS dxd by the doctors, with abnormal MRIs, abnormal LP, both, or by clinical exam alone?  You said you are treating the Lyme with antibiotics.  Were you/are you treating the MS as well?  I'm just curious since there seems to be so much debate regarding the overlapping symptoms of Lyme and MS, lesions on brain MRI in Lyme, etc.  

[tory2457]

Hi Annie62, Very good questions.  I can

[Annie62]

Thanks, Tory, you answered my question.  It sounds as though you think your MS was caused by a Lyme infection and that they are one and the same (correct me if I am wrong).  

I think a lot of things are caused by or triggered off by infections-viruses/bacteria; they are finding that out all the time.  But Lyme infection as the etiology of MS wouldn't account for the genetic component that exists.  Isn't the incidence of MS like 40% or so in the identical twin of a sibling with MS?  I guess 40% of identical twins could have gotten bit by a tick and infected with Lyme and got MS-type symptoms that manifested between (approximately) 20-40, but that would be unlikely.  Also, some of the highest rates of MS are found in countries where there is very little Lyme disease-like Australia for instance.  And I am sure there are other countries (though I would have to research this) that are infested with Lyme that have low rates of MS.  Also, it's possible to have both--to get MS and then get bitten by a tick and get Lyme, or vice versa.

I will be watching the Primetime special on this, though, to see what they have to say about it.  It ought to be interesting.  Also, I hope that whatever you have that your symptoms are not progressing.

[tory2457]

Glad you have interest in the ABC special.

There are countless people with a MS diagnosis who are now on antibiotics and have HALTED their progession. It's amazing to read their stories, and these are people with progressive MS. I on the other hand am considered benign, although have harbored this for many years.

Here was one option I had: My neuro suggested I begin using a CRAB drug in order to not grow old and end up in a wheelchair.

Then I educated myself regarding lyme: And I decided to take what is referred to as the -antibiotic challenge -

I have in these last few months: tingles in my feet, face, arms begin to subside, less brain fog, less stiffness in my neck...I feel better. Each day I am feeling better...

My body is telling me I won't have to worry about progression, just the opposite...I look forward to an MRI showing that the lesions are either very very slight, or perhaps even gone!

As for the twins? I would think "playing" in the same yard, or field would be an easiesr answer to a similar diagnosis rather than genetics. Many members of families do in fact end up treating for lyme.

There is by the way a map/article by Megan Blewett done by the OSABD on deaths in the US from MS and deaths by Lyme, it's amazing...it's like looking into a mirror.

Best to you,
tory

[Annie62]

Hi Tory.  You wrote:  There are countless people with a MS diagnosis who are now on antibiotics and have HALTED their progession.

I can think of two possibilities:  one, they are in a remission as are many people with MS; two, they got an incorrect diagnosis and they actually have Lyme or some other bacterial infection.  

You wrote: As for the twins? I would think "playing" in the same yard, or field would be an easiesr answer to a similar diagnosis rather than genetics. Many members of families do in fact end up treating for lyme.

No, I mentioned *identical* twins--those with the same DNA--not just fraternal twins or siblings who only possess 50% of the same DNA.  The identical twin of a person with MS (having the same exact DNA) has about a 40% chance of getting MS whereas fraternal twins or other siblings of those with MS (possessing only 50% of the same DNA) only have about a 3 or 4% chance of getting MS.  So, there is a genetic factor, and it is a significant one.  I'm not saying there isn't an environmental factor as well (exposure to certain infections, toxins, or whatever--because it is believed that there is a link to early exposure in life to certain infections--but that is probably true of most diseases.

I know that there is a higher than usual incidence of MS in countries with very little tick-born/Lyme infections (like Australia), but I also am going to try to read up on if there is a lower than normal incidence of MS in those countries with a lot of tick-borne infections.  

I'm not saying that there isn't any link between MS and Lyme-it's possible exposure to one of the tick-borne infections triggers off MS or predisposes one to MS later in life, but I have never read of any such thing.  However, I will keep an open mind and watch the Primetime special to see what they have to say.  

Also, this reminds me of something my sister (who is an evangelical Christian) told me about 7 years ago when I had the start of more neuro-type symptoms (still undiagnosed, though getting closer) and also after my cousin was just dxd with MS.  My sister told me about someone she knew that had MS and who started on a barley green diet and her MS was cured.  My guess is that either this person she knew either never had MS and got an incorrect diagnosis from the doctor or else she did indeed have MS and 7 years later the barley green isn't  working so well and no one bothers to use her as an "example" of how barley green (which somehow they believe to be more religiously sanctioned than other grains :) cures MS.  

I'm not comparing your use of antibiotics to treat your MS to this kind of quackery, just saying that maybe your getting better after starting antibiotics is due to a natural remission of symptoms as is common in MS or else you have a diagnosis of Lyme instead of MS (unlikely since your doctors believe it is MS)--or that you have both MS and Lyme and the Lyme symptoms are responding to the antibiotics.  I try to think of everything :)  Anyway, it's an interesting debate.  I always wished when there was debate on this subject in the past that the CCF doctor would have shared his/her thoughts/knowledge on the matter.  I found it interesting, though, his/her response to the first question in this thread regarding negative LP as well as negative MRIs and MS diagnosis.    

[sam85204]

could you send me the info on that doctor you spoke of in Washington who is familiar with lyme's disease. Email me at: ***@****

thks
Sam85204

[tory2457]

Hi Annie,

I decided to begin reading this forum again from the start: I agree with the doctor's answer to the original question regarding her MS symptoms for 12 yrs etc.

I do however disagree with what the doctor offered in continuing the search for a diagnosis. Why? As usual, there is no mention of a lyme test. Continuing her/his search is necessary...but why is poor lyme usually off the table?!

Now moving forward and answering your question about How of If I now have Lyme or is it MS or MS induced Lyme...I really don't know how to answer that! I have lesions in my brain and spinal cord, I have L'Hermittes, low body temp, sore joints, tingles and numbness, I've lost coordination, sharp stabbing pains in my head, etc. etc. I have recovered from my symptoms. MS'er are considered Mild/Benign or RRMS..if they recover...then there are the PPMS Progressive folks, they have symptoms and typically don't recover, or don't recover fully? Please understand,,,I'm not a doctor,,,I am stating this from reading about MS suffers. This is my opinion...I am considered benign.

There is research out there that "backs up" the therory of MS being an infection.  
How you want to describe it, call it, label it is I guess up to you.

I'm stuck in the middle!? I have a MS diagnosis, but after 20 yrs of steroids and CRAB injections I am treating with antibiotics and am FEELING better....finally!

Call what I have what you'd like: but please don't insult me by calling it Quackery...that simply fuels the ongoing political debate surrounding lyme disease...

There are too many sick people who need to educate themself on borrelia....because they too have one thing..HOPE

hope to feel better, hope to "possibly" HALT a disease there is no cure for....

Karl, is just one in many that can tell a story of his hope, but Karl also did a lot of research, and continued to look for answers!

As for the twins,,,I will stay away from the whole DNA thing at this time Annie, only to answer this way:
keep your eyes on Autism....It's what.. almost an epidemmic?

Autism could be what finally breaks open the sad silence and wrongful thoughts regarding lyme disease.

I do hope that you do find your answer Annie, I'm sure like most of us out there you were tested for lyme and received a negative test result?
But, may I ask if your doctor who tested you for lyme also did a CD57?

Again, Lyme like MS is a clinical diagnosis.

Best to you,
tory

[Annie62]

Hi Tory,

First let me say that I wasn't trying to insult you.  I wasn't comparing your use of antibiotics to treat your symptoms to quackery, and I stated that in my post (if I were you, and I thought that some of my symptoms might be due to a Lyme infection, I would go on antibiotics, too, to see if the helped).  I wasn't clear, though, as to whether you actually had a positive test result for any of the Lyme infections/bands (forgive me but I am not familiar with the jargon concerning Lyme disease).  I *was* questioning, however, if your feeling better on the antibiotics to treat what you believe is a Lyme infection was instead a natural remission of your MS symptoms (since you say your MS is mild/RRMS).  I also suggested that you might have both MS and Lyme (I mean, having MS doesn't preclude one from being bitten by a tick and contracting a Lyme infection, right?) and that the antibiotics were successfully treating those symptoms that were from the Lyme.  

You stated that you had lesions on your brain MRI that doctors believe are from MS.  Maybe your doctors need to reexamine your MRIs or maybe if the antibiotics truly help with your symptoms they could do another brain MRI and the lesions would lessen/disappear.  I don't know if that is possible with Lyme after antibiotic use; perhaps you know.  

And I do realize (as I stated in my post) that different infections are thought to possibly be implicated in MS (from what I have read, chlamydia, Epstein-Barr, herpes-don't know what else) and that MS is not just a product of genetics but environment as well.  I have not read any research, though, that shows increased incidence of Lyme infections in people dxd with MS (possibly linking the two), but I realize that doesn't mean there isn't a connection just because I haven't read on it.  Maybe the Primetime special will show a potential link between the two, I don't know.  

I think the reason the doctor didn't mention Lyme to the original poster as a potential dx was because from what the poster told of her symptoms (basially paresthesias and fatigue) Lyme wasn't at the top of the list of things that came to mind as a dx.  This same doctor has mentioned Lyme numerous times in responses to other posters' questions, so it's not as if there is some conspiracy to exclude a Lyme dx when symptoms point to potential Lyme.  I understand, though, that a lot of doctors don't know that sometimes negative test results on the ELISA don't necessarily rule out Lyme, and thus a lot of those with Lyme go undiagnosed and untreated.  So I *do* understand the frustration that those who are sick, continue to go undiagnosed and then eventually find out they have Lyme experience.  I have spent 13 years trying to convince doctors that there is even an organic basis to my symptoms (non-psychosomatic), and only finally succeeded in doing that about 6 months ago after a positive test result showing autonomic neuropathy, which is finally leading to a serious work-up to find the cause, so I know all about frustration and being dismissed by doctors.

You are right, I was tested for Lyme back in '99-probably the ELISA-and it was negative.  I realize that doesn't rule out Lyme, but considering my symptoms in total (even though some of them can be caused by Lyme) and the presentation of my symptoms back in '90, I don't believe my symptoms are due to Lyme.    

I think this thread closes to new comments after 40, so if you want to respond you will be the last one.  Good luck to you and I hope whatever you do it works and helps you to feel better.  

[tory2457]

I appreciate you retracting your incorrect hypothosis of quackery and lyme disease.

I am however replying to you for the benefit of others who are here to find answers.

You personally have decided on "self diagnosis". You state over and over You don't Think It's ....and You Don't Think because of your sypmtoms that....

and that's your business.

I on the other hand, have always sought out the best care I could afford.  I traveled 2.5 hrs to a teaching hospital in Philadelphia to be treated by 2 very well known researchers in the MS field! But, you question (whether my lesions from MRI's with and without contrast I have gotten over the years showing lesions in both my brain and spinal cord) that those 2 Dr's maybe were wrong?? in my MS diagnosis?? I wonder how they would respond with your question?? I wonder if I can have my MS diagnosis changed, if an ins company will revoke the diagnosis, maybe I can now get life insurance?

hmmm.

OK, going forward...I now travel 6.5 hrs to see a Board Certified Internist, who is very knowledgeable in Lyme Disease, was tested, again more MRI's with and without contrast...and I was given a Clinical diagnosis of Lyme!

You, and so many like you, that have never been tested or seen by a doctor that is lyme literate, seem to get stuck on the labeling? and continue to discount a disease..yet yourself was never tested ? Nor taken the antibiotic challenge?

Multiple Sclerosis = many scars. I have many scars.
I used to treat my Symptoms of MS with a CRAB drug.
I now am treating the Cause of my MS...an infection, and am feeling better.

Lyme disease presents itself Just Like MS; the most common feature are lesions found on MRI's of both MS and Lyme patients.

That brings me to Pleomorphism: are you familiar with how borrelia easily changes depending on its environment?

It explains why Spinal Taps won't show Lyme disease. The spriochete already has changed to a L or cyst form! It's an amazingly smart bacteria.

Again Annie, you responed with a lot of You Think:

I can back up my diagnosis.

It would have been very irresponsible on my part to post here about a disease if I wasn't tested for it.

If the CDC wouldn't state that 5 bands need to be positive; I like many many many others would have a positive lyme diagnosis... there currently is a political war that is keeping these inaccurate testing guidelines from being changed. But the CDC also states that the guidelines ARE NOT to be used for diagnosis purposes???
What?

And who is this causing an issue with? Not the healthy doctors, but the very sick patients.

Like mcg99, I share with her L'Hermittes, fatigue, joint pain, numbness, tingles, brain fog,and I was reaching out offering anyone interested to become their own advocate! I don't think I am too uncommon..I don't think my symptoms are so different than someone else with the same symptoms.?

Unfortunetly, we as sick people, need to learn about why testing for Lyme is flawed and continue to ask questions when no one can give us answers.

Lyme like MS is a clinical diagnosis!

I wish you well Annie, I hope you finally will find what has been causing you discomfort for many many years.

the best,
tory

[Annie62]

I guess it doesn't end at 40 posts.

You said "I appreciate you retracting your incorrect hypothosis of quackery and lyme disease."

Tory, actually I didn't retract anything because I never made any "hypothesis about quackery and lyme disease," so I'm not sure what you are talking about.  I only wondered at your feeling better after treating your MS with antibiotics and suggested that maybe you had both MS and Lyme or that possibly your brain lesions on MRI were due to Lyme alone (unlikely but possible).  

Then you wrote:  "You personally have decided on "self diagnosis". You state over and over You don't Think It's ....and You Don't Think because of your sypmtoms that....and that's your business."

Once again I have no idea what you are talking about.  I have not "personally decided on self-diagnosis."  And where did I state over and over again that I don't think my symptoms are due to ... and ...?  The only thing I stated in my exchange of posts with you is that I don't believe my symptoms are due to Lyme--and neither do any of the doctors or neurologists I have seen thus far for that matter.  

You wrote:  I on the other hand, have always sought out the best care I could afford. I traveled 2.5 hrs to a teaching hospital in Philadelphia to be treated by 2 very well known researchers in the MS field!

Good, I'm glad you can seek out the best that money can afford.  I'm happy for you.  Are you implying that I haven't sought out the best care that *I* could afford?  I guess I have you "bested" because I traveled-drove in my beat up little Honda, as fatigued as I am, I might add--5 hours each way to Mayo to see an MS specialist and now will be returning to see another neuro specialist there.  I have spent thousands and thousands of dollars since '94 seeking a dx.  I am broke now.  I have also literally spent thousands of hours on the internet in that period of time as well because for some bizarre reason I had the misfortune not to have my symptoms taken seriously by any doctors that I saw until a test revealed I had severe gastroparesis/autonomic dysfunction in August.  I am certainly not going to apologise for trying to figure out what might be making me sick because no doctor was willing to do his/her job up until recently.  

You wrote:  (But, you question (whether my lesions from MRI's with and without contrast I have gotten over the years showing lesions in both my brain and spinal cord) that those 2 Dr's maybe were wrong?? in my MS diagnosis?? I wonder how they would respond with your question??

I don't know how they would respond to my question because what you wrote and what I wrote are two different things.  All I can say is you need to re-read what I wrote, although I am not sure it would do any good.  I NEVER said you don't have MS (in fact I said in one of the above posts that if your doctors thought you had MS and you had abnormal brain and C-spine MRIs then you probably have MS). What I said in my last post is that if you are responding to antibiotics (as you claim) and you have been dxd with Lyme disease, then maybe your brain lesions are due to Lyme or due to BOTH MS and Lyme.  There have been other posters on this forum who have had brain lesions due to Lyme.  I also asked the question as to whether lesions on brain MRI could disappear/lessen if Lyme was treated with and responded to antibiotics.  Please do not put words in my mouth.  I would never tell you you didn't have MS (from what you have written in your posts I absolutely think you have MS), especially since you clearly have abnormal MRIs and your doctors all believe you have MS.  The ONLY thing I was questioning is your claim that your MS responded to antibiotics.

You wrote:  I wonder if I can have my MS diagnosis changed, if an ins company will revoke the diagnosis, maybe I can now get life insurance?  hmmm.

If you tell them your MS is responding to antibiotics maybe they will consider it.  

You wrote: OK, going forward...I now travel 6.5 hrs to see a Board Certified Internist, who is very knowledgeable in Lyme Disease, was tested, again more MRI's with and without contrast...and I was given a Clinical diagnosis of Lyme!

You, and so many like you, that have never been tested or seen by a doctor that is lyme literate, seem to get stuck on the labeling? and continue to discount a disease..yet yourself was never tested ? Nor taken the antibiotic challenge?

Tory, I have several symptoms that aren't consistent with Lyme so I don't need to see a lyme-literate doctor or take an antibiotic challenge.  That doesn't mean I don't think that others who suspect they have Lyme should not see a lyme-literate doc.  And I never discounted the significance of Lyme disease in any of my postings.  I was merely questioning your belief that your MS was responding to antibiotics and suggested that maybe you had BOTH MS and Lyme and that the Lyme portion was responding to the antibiotics.  

You wrote:  Multiple Sclerosis = many scars. I have many scars.
I used to treat my Symptoms of MS with a CRAB drug.
I now am treating the Cause of my MS...an infection, and am feeling better.

And that was my only question--how you know that your MS is caused by an infection/Lyme disease.  

You wrote:  Lyme disease presents itself Just Like MS; the most common feature are lesions found on MRI's of both MS and Lyme patients.

This is why I am confused as to whether you think you have both MS and Lyme, or that Lyme is the cause of your MS or that they are one and the same thing, as you seem to talk about it as one entity and then again as discrete diseases.  

You wrote:  That brings me to Pleomorphism: are you familiar with how borrelia easily changes depending on its environment?

No, I am not familiar with how borrelia changes depending on its environment.  

You wrote:  Again Annie, you responed with a lot of You Think:  I can back up my diagnosis. It would have been very irresponsible on my part to post here about a disease if I wasn't tested for it.

Again, I never said you didn't have MS or Lyme, I only questioned what appears to be your belief that your MS was caused by a Lyme infection/your saying that you are treating your MS with antibiotics.  

You wrote:  Unfortunetly, we as sick people, need to learn about why testing for Lyme is flawed and continue to ask questions when no one can give us answers.

I agree 100%.

You wrote:  Lyme like MS is a clinical diagnosis!

Maybe partly, but it is also lab-supported, as the MRIs and LP and evoked potentials are certainly very important in making that diagnosis.  

You wrote:  I wish you well Annie, I hope you finally will find what has been causing you discomfort for many many years.

I have already been dxd with autonomic neuropathy, most likely autoimmune, but I do not know yet/neuro doesn't  know yet what is causing it-if it's a primary dysautonomia or part of some other disease process (MS, etc.)  I also have non-autonomic symptoms (mild motor/sensory) that are consistent with MS, thus all my questions with regards to MS.  I will shortly be undergoing LP to better ascertain whether I have MS or a wholly peripheral neuropathy.  

And as far as what has been causing me "discomfort for many, many years," why, that almost sounds like I've been suffering from nothing more than constipation!  I can assure you it's been just a little worse than that.

[tory2457]

Annie62

Our exchange is what these forums are all about:

Agreeing to disagree..

If you in fact re-read what I've posted it comes down to this

Very easy

Anyone who is considering finding out what "might" be the underlying cause should consider being tested for lyme!

But this is where it becomes difficult.

Testing with ONLY an ELISA will most typically give a Negative response.

"Reading" about lyme and the co-infections will enable any person to understand WHY testing needs to be at a lab (IgeneX) that tests for ALL the bands. This allows a doctor the ability to form a clinical diagnosis.

Doctors educated (in lyme disease) will look at test results including MRI's, CD57, Immune Complexes AND Symptoms, put the patient on antibiotcs for a few weeks and allow the patient to come up with a result.

It's that easy: and there is Research that backs this up.

I say again, I don't see us ever being able to discuss any of this if you haven't in fact decided to try again; and retest for lyme.

"Reacting" to a simple antibiotic is an answer in itself.
We treat teenagers with acne with antibiotics (for Years) and 2 yr olds with ear infections...and do they have negative responses to a simple antibiotic?  

I have been herxing quite nicely since I started treatment...and herxing is exactly what is making my tingles begin to subside..my L'Hermittes begin to lessen, my fatigue begin to get better!

hmmm...from a simple antibiotic? AMAZING

So, is it MS or Lyme?

My MRI's do show the proof that I have lesions (my neuro has them on file) and I now have MRI's which my current Internist has on file..same lesions.

I am sorry you have attempted for so many years to find a doctor who can diagnosis you. There are Many of people like you out there.

I on the other hand, became my own advocate..and found my answer along with countless others.

Although dealing with this bacteria isn't easy, I am on the road to recovery and am thrilled when I read about so many others that share getting better.

I do wish the best for you too,
tory

[Annie62]

I wish the best for you too.  I am glad you are doing better on the antibiotics.  I hope once I get a more definitive diagnosis I will also get some kind of treatment after all these years to either stem the course of whatever I have or at the very least for my symptoms.  Good luck to you.

[LindaS]

I have had all the same symptoms as those writing with "mild MS".

PLEASE have following checked - B12 level (blood test) and fibromaylgia (fibromyalgia).

I was diagnosed with MS about 15 years ago (4 Dr.'s).  Clear spinal tap and "3" small lesions on brain, Hermittes.  I went to a gastro, gave him my med history. He questioned diagnosis.  He discovered that my B12 level was so low that it couldn't even be measured.  

Lack of B12 causes similar symptoms as MS - fatigue, tingling or numbness, etc., etc. I started monthly injections.  I had energy!  I have received injections on a monthly injections since  PLEASE HAVE YOUR B12 checked.

I don't know if I have MS or not, but no progression of symptoms in these 15 years.

Unfortunately, I was diagnosed with fibromyalgia several years ago and I am back with fatigue and pain but I still get my monthly injection!

[Ziggy22]

This is the first time I have posted and am hoping someone can push me in the right direction.  For the last fours years I have had strange unexplained symtoms (symptoms).  I have been back and fourth to my primary doctor several times and was refered to a neurologist.  I have had three MRI with no specific findings.  I am at my witts end and wonder if I should just suck it up and live with it.  The problem is the last two months have been the absolute worse.  Let me give you some background.  Beginning of last year I went to my doctor again for fatigue and a chronic cough he said I have bronchitis again ( Get this at least twice a year).  He sent me for a chest xray and gave me some steroids to get me through.  He also tested my thyroid agian.  All test came back with in normal limits except on the higher side.  I took the medicines however, never seemed to get better.  During the summer I noticed I was having more weakness and numbness in my left side.  I figured it as being over tired I have three small kids and work full time plus voulunteer.  Went back to the doctor again for fatigue and feeeling burned out and the doctor said it must be stress.  Keep in mind my life is no more stressfull than anyone else.  At this time is found that I had another UTI.  This is a common thing for me.  Well I went through the treatments again and followed in Septemeber with my primary again.  Still not feeling any better I dimissed everything as stress and being over worked.  Then in Ocotber my father said I looked awful.  I was walking funny and he notieced that I was very clumsy and dropping things left and right.  At this time I was having more problems with my vision and the numberness was more steady now.  I took his advise and scheduled an appointment with my primary care.  Novemeber came and I saw my primary again at this time I was presenting with what he called Ataxia and tremours and this was sensation lost in my left side.  He scheduled an MRI and sent me on my way.  One week later i was rushed to the hospital because I had what they believed was a focal seizure I was confused, disortated and could not move my left leg or arm.  My speech was impaired and I was out in left field.  Needless to say they sent me home thinking I overdosed on drugs(ruled out after they did toxioclogy test).  I followed up with a neuroglgist my primary doctor sent me to.  The neurologist spent all of 20 minutes reviewed my MRI and said it is not MS and you should see a Physcologist.  Great now I am crazy.  So I sucked it up and plugged away gettin more tired and weak everyday.  Then came one morning I felt awful I was weak, had painful muscle spasm.  I found a new neurgogist( who is wonderful) and went to see him.  He ran all sorts of tests.  So far nothing has come back too out of whack.  I was confirmed to have bi lateral optic neurtis my vision is at this point 2200.  I have finished up 5 days of IV steroids the imflamation has gone in the disc and nerve however, my vision is still poor.  The fatigue is horrible cooking a simple meal for my family wipes me out.  My second MRI showed one2 T2 hyperintesity of 3mm and I have a minor case of cerivical spondylosis from c4 to c7.  So far my spinal tap fluid is clear however, there are some more test that my doctor want to have preformed.  Yesterday I ended of in the emergency room after my throat felt like someone was choking me and My face went into a major spasm where my eyes rolled in the back of my head a freind said.  My neurogoligst came to see me at the hospital and want to perform a VEP test.  I am just not sure if I am up to go thru more test.  I know he wants to be sure it is not MS since there is a history in my family my father and two cousins have it.  As well a cyst in maxilary sinus cavaity was found on the MRI. Hope someone has some advise.  I am a 32 year old female and I do not know what else to do.

[tory2457]

Sorry to hear all that your going through, and not finding the "cause" of your distress.

I'm certainly not a doctor, I can only tell you what I've learned.

I would recommend you begin to read and educate yourself about Lyme disease. There are many symptoms MS, Fibro, CFS that mimic lyme.

I can't even begin to pretend to say you might have this bacteria, but it wouldn't hurt to really educate yourself about this very insidious disease.

As you have read, I do have a MS diagnosis! I am now treating the Cause of my MS and not just the symptoms..big difference!

There is a very helpful lyme forum out there..you can tell this story under Medical and wait for responses...This very intelligent group of lyme sufferers will offer their advice.

As for B12, you are correct, and thank you for the good info. I have been making sure I have boosted my immune system which includes methylcobalamin (B12) sublingually.

Much to read about what might very well be the cause of MS and I feel very comfortable in not only making sure I won't "progress" my disease, I intend to get rid of it!

I hope you find answers, continue to be your own advocate, and continue to ask questions!

[nascarbaby]

I've had symptoms of extreme trapezus and scaline muscle pain extreme muscle weakness to the point I can't brush my hair or chew anything long even walking makes my legs tired I have to stop I also have loud swooshing in my ear which I've had antibiotics and ear drops for nd haven't helped! I have a hard time peeing it takes a lot of push for me to go even when I have to go badly I have constipation also no period and dizziness. Please help