I'm hoping someone can help me...I have MS like symptoms and small lesions (not active) in my brain (none in spinal cord) that my neuro says are not typical of MS lesions (I am 46 and he concedes that they are too numerous to be due to age). I have tested positive on the new "gMS dx" test performed by the Glycominds company, but because it's so new he is not putting much weight on this test. I am scheduled to have a spinal tap next week but am wondering if a positive spinal tap is possible if there are no active lesions? Is it even worth having? I also had a small stroke in March (this is what has started this whole thing) and I think my doc is leaning toward a vascular cause, but so far no one has been able to find anything wrong in that sense. Thanks in advance for your input!!
I had my LP done a few weeks ago. My test was negative but the doctor indicated that it's very possible that it is too early in the disease for bands to be present. That is good news for me - as it means that we still caught it early if it is MS. I have one non-specific lesion and some mild clinical signs.
I've been told that being in a flare is best but I've read that it shouldn't make a difference as what they are looking for is specific immune response cloning. That will happen regardless of being in a flare or not; so I am more apt to believe that flares do not matter as muchas disease processes do. In fact, that could be a good poll.
I think having a LP in a situation where the symptoms and/or diagnosis' are not clear, is a good idea. Every test gives them a picture of something. LP's also don't just test for MS. They tested my CSF against Lyme, Sarcoid, Syphillis, Herpes, Cancer and Infections. It brought me great relief that I didn't have cancer lurking behind my symptoms.
Hi, and welcome to the forum. Your post brings up three or four points that need to be discussed and possibly explored by your doctors.
The first is that you have "MS-like" symptoms and multiple lesions in your brain on MRI. Kudos to your neuro that he is not going to take the idiot's way out and say the lesions are due to age. However, for some reason he has said that the lesions are not "active". This is a recurring point that I need to do a whole post on. I suspect that your doc means that none of the lesions enhance. Enhancement is seen with new lesions that indicate that the blood-brain barrier has been broken and immune cells have leaked across to cause inflammation. So, lesions that don't enhance with the contrast are active with inflammation.
Those lesions you have may well be "active" in that they may be causing you symptoms. No one can say that lesions seen on the MRI aren't neurologically active if the patient is having neurological symptoms. It is impossible to draw direct correlations between lesions and symptoms. Too many doctors do not know this.
Since you are not yet diagnosed it is interesting that you have had what sounds like a confirmed stroke. If so it is important that you have been tested for two of the common MS-mimics that cause strokes. The first is Anti-Phospholipid Syndrome (also known as Hughes Syndrome). In this condition the person has antibodies which cause an increase in clotting. The person may have multiple small stokes, a history of repeated miscarriages, history of deep vein thrombosis, or a family history of those things. It is important that you and anyone being worked up for MS to have this testing. It is a panel of blood tests.
Another MS mimic causing strokes is a condition called PFO - Patent Foremen Ovale. This is a small hole which has persisted between the two sides of the heart. Tiny little clots which form in the veinous circulation can slip through the hole and then be shot directly up to the brain. This condition is usually tested for by a cardiologist.
We have seen both of these conditions be the cause of someone having MS-like symptoms and multiple brain lesions. Just in case your doc hasn't considered these possibilities.
The O-Bands (standing for Oligoclonal Bands) form during the course of the disease. You don't need to wait for a relapse to catch them. Once you have an O-Band in the CSF it will likely be there life-long. You gradually acquire more and more of them. The second LP test that can suggest MS is the IgG Index which is a derived number indicating how much more or less immune activity is happening in the CNS as opposed to the rest of the body. It is possible that this number might be changed somewhat by a concurrent relapse, but, I have never read that it is desirable to wait for an attack to do an LP. Some neuros believe that, but I do not believe that the delay in diagnosis is worth the possible small change in the test results.
An LP will not be changed by having an active lesion.
I have been out of the MS loop for much of the last year and am new to the gMS Glycominds test. It looks promising, but I haven't seen scientific validation of it yet. Other promising biomarker tests for MS like the MOG and MBP proteins were shown to have no use when they were studied rigorously.
I am interested in what symptoms you have been having and what your thoughts are on my comments. If I have missed them, I apologize. I am only newly back to participating here after a really bad year.
Thank you so much for all the info! Very helpful for this nervous girl! To answer your questions...I did have a stroke panel blood test done right after the event which came back "fairly" normal. There were 2 blood mutations that can effect clotting, but they are quite common in the general population and the docs didn't seem to think they are a significant factor. I don't know if this series tests for Hughes Syndrome, but now that I know about it I can ask my doc - thanks for that! Also, they did test for PFO (I had a TEE) and cardiologist said no hole, my heart looks fantastic - a hugh relief! My symptoms are, for the most part, mild and fleeting. I get weeks legs (and sometimes arms) for brief periods. I also get tingling in my feet and hands, stiffness (I call it clenching) in my shins, calves and hamstrings. I also have a myriad of muscles spasms (tics) in my arms, legs and stomach area. These symptoms are not constant, and when they do happen they're usually brief. Some days I don't have any symptoms at all. The only exception is bladder problems (which I've had for at least 5 years) - unable to empty my bladder, have to go soooo frequently and often have trouble starting urination even if I feel like I have to go bad. The last thing is that I have had bouts of pressure in my chest that will often wrap around my ribcage to the back. VERY uncomfortable! I had my gallbladder removed in February thinking that was the culprit, and it has helped some, but I still get it every so often - this also has been happening for about 5 years.
My neuro is an MS specialist and I like him a lot. I'm thankful that he's very thorough and is willing to explore every possibility. I guess my fear is that since he doesn't feel the lesions are typical of MS, my symptoms are mild and I test normal on the neurological tests (reflexes, etc), MS might be missed (until something else happens???). Hopefully the spinal tap will shed some light on the situation. Thanks for listening...sometimes it helps just to get it all out!!! Have a great day :-)
No, I wasn't nervous about the LP. I was anxious for the results as it ruled out a lot of other options for my symptoms as well. It brought me relief that they were all negative and I knew that it being negative didn't mean I didn't have MS.
I ended up with the spinal headache and after 4 days, my MSologist instructed me to head to the ER where they performed the blood patch. The headache went away right away but I still have issues (the doctor was rough on me) with my back. It's bruised and sore to movement.
All in all, I would do it again even in a year if that's what I needed to do as part of a follow-up process. :)
wondering if what you have id CADASIL as my mother was diagnosised with this, brain lessions similar to ms / not active and makes you prone to stroke? Wondering how you made out with all this... ? Hoping for the best for you! I am in process of possible MS diagnosis now...
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