Hey.. good morning everyone!
I know many of you are in the same dillema as me. I am not dx'd with anything yet (just got lymes test and am waiting for results), they have "ruled out" MS, but I'm still very scared and worried that it may be MS.
At this point I hope I have Lymes. But if it isn't Lymes, I don't know what to do.
I had a Brain MRI (w/wout contrast) in May 07 that came back Normal. Also neuro didn't believe I had any neurological disorder. I just had brain and cspine mri (w/wout) contrast a few weeks ago that were again normal. NCS was normal, and neurological exam was normal. She said it was not MS, being I had all normal tests. But it is still dwelling in the back of my head. Almost all my sx are sensory (numbness, tingling,twitching, dizziness,feelings of cold liquid running down legs and arms,feels like my feet are wet, and fatigue) along with occasional aches/pains/weakness widespread. I'm also having Horrible memory fog, and bouts of anxiety. My brother in law has MS and told me that his all started this way too. So that wasn't very encouraging!
So I guess my question is, What are the chances that this is MS? I know that after 2 sets of MRI's 1.5 years apart, something would've showed up if it was. Right??
Any help on this would be appreciated.
I am in the same position as you. I have a clinical dx of lyme with no concrete positive tests. I still feel as if I am between 2 diagnoses and this is not a good feeling. All of my symptoms are neurological in nature and are classic MS symptoms. I had an MRI of the brain and spine last year that was clean and will get another one in September of this year. Its very difficult to not think about the possibility of MS. All I can do right now is stay on the medication and the protocal that my LLMD and have faith that I will get better after treatment. I am still going to be seen by a neurologist because I feel that nothing can be ruled out at this time. I hope you are put at ease once your test results come back. Hopefully, they will not be inconclusive like mine were.
I felt the exact same way and still think about it but all testing was normal. So really, I'm in the same boat as you guys. If you read MS forums you will see people post that MS is hard to diagnose. In fact, as verified by the multiple neurologist I saw, the vast majority of people with MS have lesions or abnormal spinal taps etc..It is a very rare case where people with MS do not have abnormal tests. One of the neuro's I saw told me he had never seen anyone with as many symptoms as I had who had had MS that did not have lesions on MRI. He told me it was not MS but he said he "did not have a clue" what was wrong with me.
Sometimes the diagnosis of MS is not made because of misinterpretation of results by physicians. There was someone who had UBO's (unidentified bright objects) on MRI. The neurologist told the person it was not MS but it turned out it was so it was really there all along. Another person said they were misdiagnosed for over 5 years.. Turns out, they had symptoms for a long time and no one ordered an MRI. So my point is that most people have lesions with MS.
If you think about the mechanism of how MS is thought to disable people...it is because the immune system in the central nervous system has turned against the myelin (protective sheath that covers the axons) in the brain and spinal cord. It begins attacking it as if it were a foreign invader. This causes damage to the white matter and is usually seen on MRI.
The theory behind this is there is molecular mimicry. There is an initial infection by virus or bacteria and the immune system is sending antibodies out to attack it. It begins to mistake the myelin for the actual virus/bacteria. The immune system then begins to mass produce antibodies that are actually attacking the myelin. When they do a spinal tap they are looking for these antibodies and call them O-bands.
Initially, the body can repair the damage and so symptoms can come and go. Eventually, the area can become a plaque and can't be repaired.
I think that MS is a diagnosis that should not be made lightly. I was told by a few Dr.'s that they thought that I had it, but no one diagnosed me. I have numerous white matter lesions and my sister has said that it is a miracle that I don't have more problems considering all the "holes" (@13) in my brain..lol I was told that my left sided symptoms were coming from my lesions, mostly right sided and one area forms a "cluster" of 3 or 4 lesions close together....who knows??? I also had 1 O-band in my CSF and none in my serum. I totally take MS seriously.
I think there are differences between the two diseases, but the further the progression, the more difficult to sort out the two. I am now grateful that I was told by the MS specialist that he didn't think it was actually MS and I would only have a small chance of it being MS. Why was this, because my lesions weren't in the normal places for MS, my symptoms were getting progressively worse and weren't coming and going, my lesions never changed on MRI. I sure had other Dr.'s that told me different though,...scary.
I am not saying that you can completely rule out MS, but if you aren't showing the basic signs of the disease...take it as a gift, keep looking elsewhere. The symptoms you are having could be due to neuropathy of a peripheral origin, and not central (like in MS). There is a chance that the damage is too small to show up on MRI, this is probably what happens in the very small percentage of people that have no lesions and do have MS.
I guess I just don't want anyone to "wait around" for an MS diagnosis, if they are getting signals that isn't what they have. The neurologists that I had seen would have let me keep doing MRI's and LP's forever. I would have just gotten sicker.
After reading "Cure Unknown" it really struck fear into me because it talked about one of the antibodies to lyme disease being shown to attack myelin....it was the antibody that my western blot showed as a ++++ (strongest response possible)--- band 31. If you let an infection simmer, there is more chance of the molecular mimicry happening, IMHO.
Anyway, I completely take this whole conversation seriously and don't think you should turn your back on either disease!!
Professor Nicolson's comments in response to a fibro member:
"I consider that there is a fine line between MS-like symptoms and FMS. Often this is due to chronic intracellular infections like Mycoplasma or viruses. These infections can trigger autoimmune reactions by stimulating the release of cell antigens that stimulate autoimmune immune responses."
I can also tell you that there have been people who have been misdiagnosed with MS and who have had CFS, lyme or another diagnosis.
Also, what you may find interesting is that a new research institute in Nevada is doing research to benefit CFS, fibro, autism and what they refer to as "atypical MS". Here is a link about this institute:
I don't know that this adds to the conversation here, but my LLMD had me take a SPECT test (done in a machine like an MRI, but not an MRI test) which shows areas of the brain that are not getting enough blood flow (hypoperfusion) and is indicative of Lyme.
I don't know if taking a SPECT test would provide information to rule in or rule out MS or another ailment, but you might ask about it next time you see the dr.
One of the obligatory tests in MS is evaluating proteins in the cerebro-spinal fluid. Several antibodies (including Lyme...) may be detected in the spinal fluid what confirms microbes presence in the central nervous system (brain, sinal cord).
MS often affects particular organ (eye, ear, limb) in a pretty distinct manner, thus causing obvious disability...that often goes away after some time, reapears and so on. I think MS symptoms have this typical changing nature.
A lot of good ideas have already been shared here.
I strongly agree that MS can be reasonably ruled out by tests, and that hanging on to the idea after a thorough differential diagnosis will probably only keep you from finding the true source of your discomfort.
Like SOONERMOM, I had brain lesions on MRI, about 7-8 of them, but they were considered non-specific and thus I was not diagnosed with anything. My LP was totally normal. I went from neuro to neuro, and all they could say was that I didn't have MS yet, and that I should wait and see with repeat MRIs.
At the same time, I became disabled. I was too sick and too tired to function. It made no sense to me that I could have MS, because I had too many problems and symptoms already. I knew what I had was already going full force and waiting 6 months would get me no where but unemployed!
All of my neuros (four!) and my rheumatologist and my primary care doctor stated that I didn't/couldn't have Lyme. They seemed to want to keep me in the "wait and see" category. It was through educating myself and listening to those around me and those I met online that I was able to get my mentality away from thinking that I had an incredibly rare presentation of an incredibly rare disease.
In the end, my Lyme was more of a *decision* than a *diagnosis*. Had I taken my doctor's advice, I would still be very sick. I decided seeking an LLMD was worth the risk and expense, and my only regret is that it took me so long.
Here is a link to an article about diagnosis MS and a list of about 100 MS mimics:
From what I understand, it is very difficult to find lyme antibodies in your CSF. If you have lyme meningitis, it is more likely. My LLMD says something like 15% chance in known CNS lyme. It was something about it going into the cyst form while in the CSF, so the body doesn't recognize it.
My friend that went numb from the waist down and is now in a wheelchair tested positive for a few lyme antibodies in her CSF...of course she is still being told that it isn't lyme. One was for the DNA of borrelia.
My CSF test was negative for lyme. I have had a lot of improvement with oral abx, my friend has not.
When I had my spinal tap done in October, I had a small amount of lyme to show up in my CSF, but my neurologist didn't say anything about it. I also had a (+) lyme band that he did not mention. The only thing that he was concerned about mentioning was the Myelin Sheath based protein that was elevated in my spinal fluid. Since I had no "O" bands, he was and still is convinced that this is not MS yet. It was through this forum that I was encouraged to seek out the advice of a LLMD. My Igenix test was inconclusive but had + band 41 and many other IND bands. My LLMD considers IND bands to be (+) bands because there was an indication of a reaction to the antibody.
Just as Wonko stated, the clinical dx of chronic lyme was given to me as a result of the test, symptoms, and a low CD57. I am not 100% convinced that this is lyme, but I do trust my LLMD and have started on treatment. I too have started to educate myself about lyme disease and this has certainly helped me to learn more about the disease. The most important thing is that I get better. If I don't, I will find another LLMD to help me. In the mean time, I will continue to see my neurologist and I actually have an appt with him on Monday. It will be interesting to see what he has to say about the new developments that have taken place.
My friend wasn't told about her + lyme in her spinal fluid either. When she confronted her neuro and asked him WHAT it was that was floating around in her CSF (if it wasn't lyme), he couldn't answer her.
Of course he was my neuro too, and he told me that I couldn't have lyme even though I showed 10 antibodies to it in my blood. He mumbled something about false positives....I said how could I show SO MANY false positives??? NO answer.
Would they ever say that about ANY other infectious disease...you have a small amount of HIV, TB, or MRSA...not to worry!!
I find the little bit of lyme in the spinal fluid very interesting in light of the fact that it is present only 15% of the time on people with severe neuro lyme. Actually the severe neuro lyme may be us...I wonder.
I have joined another MS forum here in the UK, and last night I received an email from someone who really made me worry. I'm going to paste some of his letter below.
" I had a long chat with my doctor and I explained how none of what was said to me made any sense and I was fed up with the neuros all saying one thing and changing their mind mid sentence. My doc explained about a case study they are taught in medical school to show them how to deal with patients like me. In their case study a young woman turns up with symptoms much like ours. Tests show nothing, after a couple of months the symptoms ease. The doctors tell the patient that nothing is wrong and send her away even though it is clear that it is early symptoms of MS. Neurological symptoms of our kind along with a positive MRI show that MS is a real within a few years. Neurological symptoms with clear MRI show that it either isn't going to be MS ever or it is unlikely to be MS for at least five years."
I mean I still know that MS is a possibility even with clear tests, but do you really believe that the dr's know it is MS and keep it from us??
This is interesting..
I am also dealing with the same thing. I have twitching, tingling, visual starbursts/halos/static, vertigo when moving my head in certain ways, heart palpatations, and chills.
I had a complete neuro workup including mri's, VEP, nerve tests, EEG and bloodwork all comming back normal. My next step is getting tested for lyme. I'm going to have a repeat mri in may..my neurologist is almost certain it's going to be another normal mri. I'm gonna cross my fingers...
These illnesses (MS, CFS, lyme, etc.) have so much in common. The CDC had a study of CFS patients and found out that a little more than 10% of these patients were misdiagnosed. One of them, who was abused by her doctor, actually had DIABETES. It is just ridiculous that many of these physicians don't believe or know about how bad fibro, CFS or lyme really can be and how closely their symptoms are related to MS.
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