Doug,  [smiley=hiya.gif]

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.  [smiley=confused.gif]

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

wrote on Jan 16^th, 2004 at 11:05am:

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.

I've heard the same sort of thing from just about everyone I've talked to with MM... now that I think about it.  Maybe we should start a poll to see how many MM'ers have been diagnosed with MS at some point?  Could be interesting!

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

Hi DJ,

Do you think Dr. Steinberg have an opinion on this? A very educated opinion, it will be. From what I've read on this board, he seems to be a very caring doctor and surgeon.

I was operated by Dr. Neil Martin at UCLA. When I asked him if there's a possiblity of me having both, he said yes. So he referred me out to UCLA's MS 'specialiist' and she said I definitely have both ms and mm.
I know I have mm but ms too?

You know, doctors confuse me. They want to diagnose me with a disease they are familiar with so they can treat it. Nevermind, that it may be the wrong treatment. On the surface, it looks like ms but if you dig deeper and know about mm and the damages it can inflict on the brain, there's a chance that it could not be ms.

Doug

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

Maybe we should start a poll to see how many MM'ers have been diagnosed with MS at some point?  Could be interesting!

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

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

[smiley=winkkiss.gif]

Doug,
         If your HMO will allow it I would definately see Dr. Steinberg he's one of the best with mm, I don't know if he can rule out ms I can't see why not if that's the case our experience with him was wonderful. Good Luck! Keep us posted. [smiley=smile.gif] ;;D

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. [smiley=confused.gif]

I was sent to test for MS as well.  That was my doc's first instinct also.  Just thought I'd add my experiece as well!! -Shari

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

Doug,
Do you know I was thinking the same thing? That is untill I reviewed my scans and it really does seem that I am missing som of my myelin sheath. Fortunately though, it hasn't stopped me yet!
Freckles

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

Doug,
Word of advice: DO NOT MOVE AFTER THE SPINAL TAP FOR AT LEAST TWO HOURS!!!! Or better yet, for 24 hours. Trust me on this one. Because the doctor was trying to figure whether or not I had ms he sent me for a spinal tap. He told me to lay down for about an hour, then sent me on home. Two weeks and two hospital visits later I was still getting headaches from the stupid test. I was simply miserable.
I pray that this does not happen to you. I.m interested in knowing how it turns out for you, please let me know and good luck.
freckles

Hi freckles,

Just curious: what was the result of your test?

Doug

Hey Doug,

Just writing to tell you that you have a friend out there.  I was diagnosed with MS years ago, and went through the gamet of tests.  My advice is to stay still for 24 hours after the spinal tap, lying on your back.  I am glad I went through the testing, because now I know I just have MM.  When I was experiencing symptoms no doctors knew what MM was.  The only way I knew something was wrong was because I passed out and became numb on one side. Good luck and take care
Your friend Alice

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 everyone,

Can those of you who were"misdiagnosed" with MS , please share your experiences with me. My current neurologist seems to think that I have both.

This is hard for me to believe since there is no family history of MS in my family. Tghen again, there was no history of MM either but I have it.

Can you let me know what the basis of your MISDIAGNOSIS were. He reviewed my scans and there's plaques in the neck and certain areas of the brain that he said MM couldn't account for.

2nd question: What medications/treatments are you on post MM surgery? Any of you on blood thinners? The docs were against me going on blood thinners going into the surgery but I am wondering why I'm not on it now. Maybe there's a medical reason????

Thanks all.

Doug

Hi Doug!

Hi Doug!

OK, let me try again!
My daughter is still on bloodthinnerinjections daily, in Swedish it´s called "Fragmin" and she was on it even the same day of the surgery which puzzled me, but they said it was OK with this kind of bloodthinner. The doctors plan to let her "grow out of it" which meens she will have the same amount daily for years and while she grows bigger and heavier the medicine will be weaker and weaker. ( I sure wish that all of you guys knew Swedish, it´s so hard to explain these medical stuff in a foreign language!)
What kind of medication are you on, injections or pill.
From what I understand there are many variations in medication among the people of this board and why is that? We are still talking about the same MM, arent we?
Are there perhaps as many different types of medications as there are doctors?

Annica

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

I as diagnosed w/MM 10 years ago.  I, too, was admitted to the hospital with MS.  I was told that the MRI shows adnormalities in the brain.  MM "mimics" MS.  The next "usual" test to confirm MS is a spinal.  If no positive conclusion for MS then the angiogram is done.  That test generally eliminates MS and proves the presence of MM vessels.  From all these years of having MM, this is what I have come to learn.

I now have developed a neuropathy that I am being tested for.  Once again, they are looking for MS.  Had an EMG, another spinal, and will get a nerve biopsy next week.  Hopefully, some conclusive findings will be found soon.

I did, however, want to pass on the tests that most MM patients go through in getting a correct diagnosis.

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.

I hear ya Doug it stil Pi..... me off that my daughters life has been totally ruined because of a misdiagnosis even though it wasn't MS it was epilepsy. Thats a perfect example to everyone out there of why you need a MOYAMOYA SPEACALIST not just any Doc. excellent, excellent example, which stinks for you but hopefully it will help someone else.
                    Nancy :-/ >:(

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

Hi Doug,  Sorry you have both, but I guess atleast you know now.  You'll be in my prayers to feel better and get the proper treatment.  Hang in there!  Tricia [smiley=hug.gif]