Doug, 

I read your post regarding your diagnosis of MS and MM. I have to say that all the people I've spoken with this past year who were once diagnosed with MS, said that they were misdiagnosed. For some reason, it seems that the doctors that know little about mm, seem to diagnose MS. They also misdiagnosed my niece as well, later to find she had mm.  Do you remember someone on the old message boards named Jessie? They said, that the cells in their brain were missing the myelin coating that protects them and that was their doctors reason for diagnosing MS and later finding out that it was Moyamoya. I don't really understand the connection. I only know that many people have told me that they too were diagnosed with MS and after their mm surgery, MS was never mentioned again.

Do you have a moyamoya specialist? One that can answer these questions from experience? The brain is so complex. Perhaps the damage to the brain from mm or the TIA's and strokes in some cases can cause the same symptoms you're having. I wish I had an answer for ya, it's something I'd like to know. 

Good Luck, we'll keep lookin for some answers.

Hi Mar,

Thanks for responding to my post. Unfortunately, I don't have a neurologist that "specialiizes" in mm. I have an HMO and I've ran through their gamut of neurologists. Still not finding one that understands mm. I had my surgery at UCLA. My open enrollment to switch to that group is in July. So I'm hoping nothing major happens between now and then.

After my first surgery, last Feb., I was consumed to PROVE that I too was misdiagnosed. I wanted to find out what was the basis of their misdiagnosis. The only reply I got was when they were hit with a stroke, they forgot about the ms.

Actually, the info you provided is something I can use. Not just forgetting about it because if I have both I want to know.

I've been off the ms therapy (Betaseron) for almost a year and a half now and no new symptoms have appeared. Knock on wood.

My current neurologist wants to deal with my ms. He's ordering a lumbar puncture. Can you believe it, my former neurologist diagnosed me on the basiis of my MRI. Now when I tell people they can't believe that a lumbar puncture wasn't performed.

He's concentrating too much on the ms aspect because that's what he's familiar with, I think. He's a good neurologist but let's do the l.p. and go from there. If it comes back "negative", then maybe I don't have it. I don't want it.

Strange, most of ms symptoms occurred on the right side and when my stroke occurred, it left me paralyzed on my right side. Maybe they were mini strokes  caused by the mm. Maybe.I'm sick and tired of maybe's. It's put a strangle hold on my life.

I just turned 30 last year. Will today be the first day of my new life? Maybe. Will tomorrow be the first day of my new life? Defintely.

Doug

DJ wrote on Jan 16^th, 2004 at 3:08pm:

Excellent idea Deej!
It may help our mm family in the future.

Glad to hear you're back to the "normal" hours.

Hey,
I'm Jessie and I never really thought about why I was misdiagnosed with ms. If anybody figures out why most doctors think ms before mm, I would love to know.

Hi Freckles,

I have a theory: I think it's easier for us to have MS  since there's more info available to them. Who ever heard of mm? I think for the most part people only learn about it if they have it or their loved ones are diagnosed with it. There's only a handful of doctors who understands the disease. While almost every group has their own "ms specialist".  Just an opinion.

Doug

Hi Freckles,

By no means do I speak on this subject with any authority or expertise. I am trying to figure out this as I go along. Do you know if that can be caused, directly or indirectly, by mm? I read whereas mm is really rare, mm and ms is really really rare.

When I was diagnosed with mm, everybody thought the ms was gone and now we know what I really have. However, the surgeon couldn't rule out ms because I had experienced double vision. Everything else, he could but not that.

My girlfriend found an article on Kaiser's website about possible symptoms mm can cause. Double vision and other vision problems were one of the possible symptoms.

Personally, everything else I experienced was on one side (right) of the body except my initial symptom which was facial numbness on the left side.

So now, I sit awaiting approval for a spinal tap to confirm one way or the other. I understand even if it came up negative, I can still have ms. Perhaps then, we can look into other possible causes.

I just know I hate injecting myself with betaseron every other day. But I will if I have to.

Doug

Hi freckles,

Just curious: what was the result of your test?

Doug

Hi everybody,

I found an interesting site in relation to MS and MM. If you click on TIA, it list a lot of similar symptoms between the 2. It's easy for physicians to mistake MM for MS. I suggest patients diagnosed with MS to ask for more tests because it may be a misdiagnosis.

Personally, looking back at my symptoms (weakness, numbness, double vision, facial paralysis) which were dismissed as MS could be attributed to TIA's and my inevitable stroke.

In my case, there's no family history of MS in my family line. I am angry at  my physician because when she found out I suffered a stroke she said she was surprised.  When I told her what I really had, she said she had patients suffering from MM. She had MM patients?! Why the heck did she attribute my symptoms to a disease that was unlikely to occur in my family and run more test to see if can be something else, like MM? This makes me angry everytime I think of it because it robbed me of the remaining years as I'm still rehabiltating after 1 year in the hospital.

So if anybody out there suspects their diagnosis, don't be afraid to dispute it or intimidated because you think they have more knowledge in the field.

I didn't want to hurt my physician's feelings by seeking a 2nd opinion. Instead, I just ruined my chances at a "normal" life.

www.nlm.nih.gov/medlinelinplus/encyclopedia

Doug

Hi Doug!

I am only taking low-dose aspirin, which is a blood thinner.  I had to stop taking the aspirin 10 days before the surgery (and it DOES depend the the blood thinner) but I was immediately put back on after the surgery.  Between my 2 surgeries (a week apart) I was on Heparin - an extremely strong blood thinner, but it wasn't stopped until the night before the surgery.

-Shari

they also tried to diagnose me with ms at first because i have white matter in my brain shown in the mri but that was actually strokes which later they diagnosed me with moyamoya.

Hi all,

Looks like my MS diagnosis is confirmed. I am currently appealing to see Dr. Steinberg and his MS speciialist who can interpret my films and symptoms from both sides.  However, I can't afford to wait until then, I am going to start betaseron treatment this week. Who knows it may or may not help with my fatigue, general weakness, spasticity, heat intoleration, and other MS symptoms. I truly wish I have "only" Moya Moya but maybe I am of those very rare individuals who just happen to have both.

Doug