25 plus years/17 Mri lesions and still a question.

[wjaher]

Having had active MS most probably since at least since 1987. I was diagnosed in 1992 but my diagnosis was reexamined in 2006. I was re-diagnosed with a genetic clotting disorder , Multiple strokes and highly possible Relapsing/Remitting MS. But outside of multiple lesions (17) on my MRI outside of clotting problems no other diagnosis can be proven. Now if I have some very rare genetic vascular disease and no MS then taking any new MS drug could be dangerous. If not fatal. I could really use some proof of MS. I am mostly symptomatic of MS. Having multiple Mini Strokes over 25 years and not dying would be a trillion to one rare. As many of you know; very frustrating. Any reality welcome. My Medical unblog is at "judeaher.com"

[KoKo]

Having had active MS most probably since at least since 1987. I was diagnosed in 1992 but my diagnosis was reexamined in 2006. I was re-diagnosed with a genetic clotting disorder , Multiple strokes and highly possible Relapsing/Remitting MS. But outside of multiple lesions (17) on my MRI outside of clotting problems no other diagnosis can be proven. Now if I have some very rare genetic vascular disease and no MS then taking any new MS drug could be dangerous. If not fatal. I could really use some proof of MS. I am mostly symptomatic of MS. Having multiple Mini Strokes over 25 years and not dying would be a trillion to one rare. As many of you know; very frustrating. Any reality welcome. My Medical unblog is at "judeaher.com"

Hi wjaher

That must be so frustrating to still be in the dark, after all this time, about whether you have MS or not.

I was under the impression that MS lesions have particular shapes, sizes, and locations.

You would think the neuros could tell the difference between MS lesions and stroke lesions?

I was wondering if you ever had a lumbar puncture in the past, which would have shown the O-Bands, suggestive of MS?

Maybe you could see a different MS specialist for second opinion?

Sorry you are going through this frustrating experience.

Wishing you the best.

Take Care

[jreagan70]

Hi wjaher: I can see why you're frustrated, because someone has obviously dropped the ball somewhere.

I was diagnosed in 1992 but my diagnosis was reexamined in 2006. I was re-diagnosed with a genetic clotting disorder , Multiple strokes and highly possible Relapsing/Remitting MS.

MS almost never remains "possible" for 14 years, let alone 19 years (going back to 1987), and NEVER remains "possible" for 25+ years. Seriously, what have your neurologists been doing for the last 11 years? MS has diagnostic criteria. Have your neurologists compared you to those criteria since 2006? MS lesions look a particular way and are found in particular places in the brain. Do any of your lesions look like MS lesions? Where are they? It might be that your neurologists back in 2006 had a feeling that your brain lesions don't meet the criteria for MS, which is why they "undiagnosed" you.

There are also criteria for what constitutes an "attack" of MS. Did you ever meet the criteria for an MS "attack"? After 25 years, there should be no question about whether you meet the diagnostic criteria. It's understandable that you might have been misdiagnosed with MS in 1992. MRIs had been in common use for MS diagnosis for only a few years, and the protocol for MS imaging hadn't really been figured out yet, so brain MRIs may not have been detailed enough at the time. Plus, with MRIs being so new, the diagnostic criteria weren't as specific as they are today. It was acceptable then for a diagnosis of MS to be made simply on the basis that the neurologist couldn't figure out what was causing the symptoms. That kind of vagueness isn't allowed anymore, which might be another reason you were "undiagnosed" in 2006. But unless you've left a lot out of your post about what's been going on for the last 11 years, there doesn't seem to be a reason that MS hasn't been diagnosed or ruled out.

The MRI criteria are now fairly specific, the definition of an "attack" is pretty well defined, and the criteria for primary progressive MS -- which may not have attacks -- are also pretty well defined. Haven't your neurologists been evaluating you against those criteria during all that time? As I mentioned before, a diagnosis of MS based only on "we don't know what else it is" is no longer allowed under the criteria. All other possible causes for the person's signs and symptoms must be ruled out. And the ruling out process is more stringent than it was back in 1992, based in part on the availability of new testing technology.

In your case, a genetic clotting disorder and strokes that have damaged your brain make it extremely difficult for other causes to be ruled out. The nerve damage caused by multiple strokes causes exactly the same symptoms as MS, so they are the more likely cause of your signs and symptoms than MS. The only way MS could be diagnosed in spite of the presence of your strokes and stroke-typical brain lesions would be for you to have classic-for-MS brain lesions and/or classic spinal cord lesions and unmistakable recurrences of classic attacks and recoveries or progressive decline that is typical for MS. And those don't hang in the "possible" category for 11 years and certainly not for 25+ years.

I am mostly symptomatic of MS.

Actually, at this point, there's probably no way you can tell what's causing your symptoms. Once nerve cells are damaged, there's a very limited number of ways in which they can show their malfunction. So once they're damaged, the symptoms are the same no matter what the cause was. The symptoms of a stroke are the same as the symptoms of MS. So it may be true that you feel that you're symptomatic of MS, but you're overlooking that those are also the same symptoms of strokes. You can't tell the cause by the symptoms.

I could really use some proof of MS.

Why is this question coming up only now? Was there a recent event that made it come up again? Did one of the doctors who couldn't make a diagnosis of MS after 25+ years decide that you should be on one of the MS treatment meds "just in case"? (My answer would be no. The meds are risky enough for people who are in otherwise good health. With your health history, the risks outweigh the benefits.) Your neurologists have 25 years of data that should be able to lead them to a definitive call by now.

Again, what have they been doing all this time? And have they been saying anything that you haven't been paying attention to? Have you ever been evaluated by an MS specialist? If your past and current neurologists aren't up to the task, an evaluation by an MS specialist should be able to put an end to the wondering, and it may be what it takes to bring this saga to a definitive conclusion.