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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.

48 Responses
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Avatar universal
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.

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Avatar universal
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


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Avatar universal
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.  
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Avatar universal
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






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Avatar universal
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
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Avatar universal
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.    
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