Okay, so I am heading back to the Neuro in a week and need some advice.
I did not present with symptoms, but instead they discovered white matter lesions in my brain accidently when I suffered a concussion. Originally they found 5-10 periventricular and subcortal lesions. (I might butcher some technical terms, but you get the gist)
My LP, VEP and all bloodwork, including tests for Lyme have been negative. I have developed dizziness, balance issues, a left hand tremor and an adversion to heat. The symptoms don't come and go, but instead have been constant for the last 6 months. They do vary in intesnsity, but have not "remitted".
My Neuro sent me to an MS specialist who said that she didn't think it was Ms soley because of the negative LP, but recommended an EEG and a second MRI. The EEG was normal, but the second brain MRI at the 6 month mark showed 3+ new lesions plus an older legion got bigger. The MS specialist still said she wanted a positive LP.
My Neuro wasn't comfortable waiting for a positive LP, so scheduled me for a thrid brain MRI to see if there were more new lesions three months after the 6 month scan. That was today, and my initial brief report from the radiologist is that are "new lesion". All lesions so far have been int he brain, periventricular or subcortal, and so far no enhancing lesions.
My question, and I know it took me a long time to get here, is: Is there anything else besides MS, that would show periventricular and subcortal brain lesions, that have increased over the course of 9 months, that I should be investigating? All bloodwork, including lyme and some ana test came back negative. Everything run with the LP, mspanel and lyme, also came back negative. I have no history of headaches. Is there anything else I should be pressing the Neuro to investigate? The one sure thing on tests is the changes to the white matter in my brain over the course of 9 months (5-10 lesions to 14+), so using that as a basis, is there anything else that could cause those lesions besides MS?
This forum has helped me come to terms with MS and my problems, and I thank you all for your advice along the way. In todays day and age I have learned that patients need to be educated and you all have heldped me do that.
To have that much activity in the number and size of noted lesions over 9 months is rather unusual (and none enhanced), although you do note some typical MS symptoms. Yes there can be other reasons. Usually the report of the MRi will say something like "suggestive of a demylinating disease..." when it is MS or something very similar. Having lesions alone isn't enough to conclude to MS. The MRIs need to be consistent with a pattern seen in MS lesion distribution, location in the brain and of course combined with a minimum of two separated clinical presentations of symptoms typical of MS. You can be negaitve for everything else, if those two conditions apply. If you get the run around ask your primary care MD to advise on a 2nd opinion with MS specialist or University Neurology dept. and get all records and MRIs and go.
Sorry not to offer alternatives although I'm sure they exist.
Yep, the doctors keep calling it "atypical". I just love being called atypical. My current Neuro is of the philosiphy that this is early onset MS and that I might not be good at picking up on my symptoms and their pattern. At the last office visit he gave me a "probable MS" diagnosis, but has been unwilling to start treatment yet. I am concerned about the changes in legions over 6 months and now 9 months, and wanted to investigate all possibilities. Also, the fact that I haven't had a "flar" but instead it has been a constant progression of symptoms. Apparently the symptoms that I have are also considered "mild" in terms of MS.
The first two MRI reports did say that it was "suggestive of a demylinating disease" and the second one (by the same rediologist) said that MS was the most likely consideration. The reports also listed vascular things as a secondary consideration, but the second report said it was unlikely.
My neuro said he would refer me to another MS clinic, but I was really looking for ideas on anything else it could be, so as not to pigeon hole myself. Just trying to be informed and go into it armed with knowledge. The way it all has come about has been a bit hard for me to accept. I am a bit stubborn that way. :)
Well, I have to disagree with Jon a little here. MS can definitely be diagnosed with a "less than typical" pattern. And there are not many other disease that cause such a rapid increase in lesions. Your increase is really quite consistent with MS.
The rigidity of the MS Neuro is not calling MS on the basis of the negative LP is something I find irritating. She is thinking very linearly and with little acknowledgement of the circumstances under which your lesions were discovered. At the time of the first MRI you were asymptomatic - no symptoms. But, shortly thereafter you developed fairly typical symptoms in what could be called your first attack. So your lesions were picked up by accident very early in the disease process. This is the time when the LP is most likely to be negative. And, about 1 in 25 people never have a postive LP. If she is not willing to look more carefully at the data and is not willing to sork to identify that 1 in 25 person, then she is lazy. THERE IS NO REQUIREMENT ANYWHERE THAT SAYS THE LP MUST BE POSITIVE IN ORDER TO DIAGNOSE MS. Period.
You actually don't have to have two "clinical attacks." That is one of the great advantages of the revised McDonald Criteria for diagnosis. It allows the neurologist to diagnose earlier. The doctors can use the information from the MRIs to supply all the info needed to prove spread of the disease through time and space. You have "1 clinical attack" and at least one "1 clinical lesion" (tremor and possibly findings from dizziness). If you have two or more different abnormalities on your neuro exam that point to damage in two or more different parts of the central nervous system then you have all the evidence you need of "Dissemination in Space." If the neurologist is not sure of this, then he can look to the MRI for the evidence.
With the increase in brain lesions on the second MRI you likely have also met the critieria for "Dissemination in Space." You should probably read my blurb on explaining the McDonald Criteria to understand these points. I'll bump it up. So you have 2 clinical attacks and 1 (or more lesions - depending on your neuro exam).
Meeting the criteria for Dissemination in Time is a little more difficult, but with the rate your lesions are increasing, you may have met that criteria also.
Now, there is a huge difference between establishing the high likelihood of MS (greater than 80%) and establishing a "Definite Diagnosis." If you have a greater than 80% likelihood of having MS most neuro's would at least discuss beginning treatment with you. I suspect you are already well into that category where the neuro can make a good case for treatment, even if the "Definite Diagnosis" remains elusive. A lot of it depends on the confidence of your neuro. I'm pleased to see that he is not so comfortable with the rigidity of the MS Specialist. If your neuro is not willing to make a decision about treating, then request a referral to another MS Specialist.
Things you might want to bring up at the neuro's visit:
* Your MRI lesions were picked up abnormally early in the disease-symptom process. Given the different abnormalities on your neuro exam can he establish, that the disease has "Disseminated in Space" ? If not, can he use the numerous MRI lesions to fill in the requirement, as allowed by the McDonald Criteria?"
* Do all of the lesions counted together also make the case for "Dissemination in Time?"
* If the diagnosis can't be made "Definite" do you fit into a CIS or very likely MS picture to justify starting a Disease Modifying Drug?
* If everyone is still getting saddle sores from riding the fence, then request an MRI of the Spine on a 3T MRI machine.
* Or decide if you would rather do the "Wait and See" thing because you are so early in the process. Remember that this could be months or years. My personal problem with the WnS method is that your lesions are increasing quite rapidly.
Sunshine, do you understand the points I have made here? If you don't then when you have a clear head read the M.C. post. Then ask your questions.
This is a great case to analyze using the explanation of the McDonald Criteria, though we don't know the specifics of the MRI lesions.
Thanks as always for the response. I do understand what you are saying and think I am finally wrapping my head around the McDonald Criteria. It is tough, though because of the abscense of initial symptoms. I have had the hand tremor and dizziness since last September,but the balance stuff, "general stupid feeling", and heat interlerance is only in the last few months. All of those symptoms have not lessened or gone away, but instead happen with the same frequency and intesity that they intially started with. My Neuro saw me and then sent me for this latest MRI. I will certainly keep your points in mind at the appointment in a few days. I think my concern is the this Neuro is a general nuero who would rather have an MS specialist diagnose and refer back to him for treatment, The first specialist was extremely dismissive because of the negative LP and lack of symptoms at the time. I will not be going back to her, ever! He will refer me to another, and that is the plan at the moment, but I want to go into this appointment with him armed. He is certainly receptive to my questions and takes the time to go through the scans with me. He does seem a bit conservitive, but is certainly following my case actively. He has said more than once that my lesions are concerning and he is not willing to take a full wait and see attitude. I am not either and am trying to get my journal and general questions ready for the visit.
A while back I posted the exact text from the two mri reports, but I don't have it handy at the moment.
I was really curious if there is another disease out there that can cause these types of brain white matter lesions in such a short time period other than MS. He has to some degree pigeon holed me to MS, but without giving me an official diagnosis and I just want to make sure that there isn't another tree I should be barking up.
It will be interesting to actually see the radiology report, since the same radiologist that read the first two scans will also read this one and compare them all.
Thanks for the reply Quix and the good advice. As always, I appreciate your input.
I just read your repsonse to Jon and I have to say: If the docs have done a thorough job of ruling out mimics, then there are not many other possibilities. There would be fewer if you had spinal cord lesions, which is why I recommended a 3T MRI.
The general raft of tests for ruling out mimics includes:
ANA, ESR - looking for autoimmune inflammatory diseases. One of these that can really mimic MS is Sjogren's Syndrome. This is characterized by dry eyes, dry mouth (two symptoms) and "lymphocytic infiltrates of the salivary glands" (discovered by biopsy). If you have dry eyes or dry mouth there should be a careful search for this. It usually has a +ANA, but can occur with a negative test. Then the biospy must be done. There are tests for quantifying the amount of tears and saliva you make.
B12 - can be a good mimic of MS. If there is a history of high dose Vit B intake, then a B6 level can also be run. Vit B6 toxicity has neurological symptoms (I don't know about lesions)
VDRL - Syphillis (syphilis) can lookd exactly like MS
HIV, HTLV-1, HTLV-II - These are human retroviruses and can mimic MS
Antiphospholipid Antibodies (may be a part of a panel of antibodies and factors that cause the blood to clot too easily). Also known as "Hughes Syndrome" or "Sticky Blood." This also can be indistinguishable from MS without doing the blood tests. The disease forms small clots which go to the brain and cause lesions neurological symptoms.
Lyme Western Blot - NeuroLyme Disease (Neuroborrelliosis with CNS Invasion) can look just like MS, but is treatable. The western blot test is better than the standard ELISA which most doctors run. The ELISA has an unacceptable rate of false negatives.
Serum Ceruloplasm - Wilson's Disease, excess storages of copper
TransEsophageal ECHO - looking for patent foramen ovale - a hole in the heart. This would ONLY be done if there was evidence of easy clotting or a heart murmur.
Consideration of a paraneoplastic syndrome if there are other factors suggesting it. I don't know much about this.
And finally, you should hear from others' here who have been diagnosed the same way, an MRI done for other reasons (like a concussion or new onset of headaches or a free MRI) and the findings show MS. It happens all the time and is very unnerving and difficult to accept. But, you have to be realistic about the whole thing as the symptoms happen.
I have an amazing story of a 3 year old child we had in our ER who got a spinal tap, "just because the attending said we had to because of a single, little pinpoint rash.... AND we had to start her on IV antibiotics!!" We were soooo busy, and all she really had was an ear infection. She looked great and was smiling and playing, but Dr. BIG said we had to. The LP was negative for signs of meningitis, but we gave her a big dose of ampicillin anyway - like we were told to. Then, at about 10am her parents came back from breakfast. They had been there for 11 hours already and they told us casually, "Oh, by the way...our daughter sleeps with her cousin. We found him dead in bed with her 2 days ago." THIS WAS THE FIRST TIME THEY HAD MENTIONED THAT!!! So, we checked and he had died of meningiococcal meningitis. 6 hours later we redid the LP on the little girl and it was full of pus cells. She had it, too. She lived and was never really very sick. It's not a perfect analogy, but we found a deadly disease (and cured it) before it showed up because the attending decided that morning to be super-cautious.
Thanks! That "list" is exactly what I was looking for. I know that the ANA was negative, the Western Blot and ELSA were both negative, HIV panel negative, and don't have dry eyes or mouth. I actually lean on the side of not clotting very well, but they have always said it is more of a problem related to the fact that I generally have lower blood pressure than normal people. I think it might be good to test mineral levels and jsut for good measure probably the VDRL, but other than that, I think that they have run everything else. I am an analytical person by nature and so my brain naturally goes the "lets rule verything else out" route.
I am coming to terms with everything, it is just difficult. I have always been very active and enjoy sports, hiking, and camping. Since the end of last summer when I fell, whcih led me to the ER with a concussion, everything has gone downhill. I tried to ignore the fatigue at first, but it has forced me to slow down. Also, the latest new symptoms involve balance issues that are making it difficult to do much since I don't have any warning when it happens. We went for a hike this past weekend, and I even got my hubby to get up extra early to beat the heat. 10 minutes in I started to fall over to the left. It is scary. The "general stupidity" has also been problomatic. I work in a fast paced job and am always multi-tasking and excercising my brain. I haven't been able to perform to full capacity for months now, but I am adapting as much as I can.
There I go, on my rant. Sorry, it is just a lot for me to have taken in over the last few months. I like my Neuro, but I am not sure that it helps that he is a bit more conservative. I think I need to get that 2nd referral he keeps talking about and fully get myself on the MS train. I certainly know that I know should insist on a spinal MRI, which they have not done yet.
Thanks Quix. I appreciate you taking the time to respond and answer my questions.
I would also love to hear from anyone else who has been through something similar, where things were discovered by accident.
I want to say hello and thank you for joining us. I'm SL and was dx'd last year with MS. It was a fast dx and caught me off guard. I knew something was very wrong, but thought for sure they were going to tell me I had a stroke
I'm sorry that this is happening, but glad you got a head start even though it was accompanied by a concussion.
So many things we can relate to here. The balance issues are very common, as are many of the other symptoms you describe. I like how your Doc is not comfortable waiting on a positive LP. I believe you are in good hands w/him. Just think it's time he made his final determination because you are getting new lesions and it is clear.
I think 2nd opinions are always good, but they are not "the final word." Seems to me your Doc has been thorough, just needs this confidence to make final determination. And, if he is holding back for 1 particular reason, I'd have to ask him/her what that reason is.
My Dr is a regular Neuro, and made the dx himself. It's not uncommon at all. Asked that I get a 2nd opinion, however believe he was for sure himself.
You've described your story so very well. Thanks again for coming our way.
I don't have much to say that hasn't been said, but I'm with Quix, really.
It's pretty odd and maybe even lucky you got that head injury to find the lesions. I just want to wish you good luck for your appointment because we all know how stressful and weird they are when you're looking for answers, especially in your case where you didn't expect to have the questions in the first place.
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