I just got back from seeing an infectious disease specialist because I have had a fever for 11 months.  He said that fever can be a symptom of MM.  He said that fever is a risk with any inflammitory disease, but I didn't think that MM WAS inflamitory.  He also said that MM isn't a disease, but a group of symptoms and that we have to find out what else is wrong and still thinks maybe I have vasculitis.  Then he said that he doesn't really know much about MM.  Ugh!  Can anyone help me seperate fact from fiction?
Also on a side note - anyone have a spinal tap as part of diagnostic process?

I'm not really sure about this, but I don't think MM is inflammatory. I thought it had to do more with the vessels being blocked in the brain. Sorry, I don't really know much, for someone who has MM. I know I had a spinal tap done before I was diagnosed, along with the MRIs, but I believe everything seemed normal for me.

tuknits wrote on Nov 21^st, 2006 at 3:44pm:

Then he said that he doesn't really know much about MM.

If he doesn't know much about MM then he really shouldn't be putting these misleading statements out there...I'm sorry - that just frustrates me.  I would definitely suggest seeking out a MM specialist before you go any further although an 11-month fever is troubeling.  

Have you, in fact, been diagnosed with MM?  The typical tests are MRI/MRA and, the be-all and end-all of diagnostic tools is the cerebral angiogram.  I did not have a spinal tap.

I would seriously consider going to Dr. Scott or Dr. Steinberg or at least a different doctor than this one!

Just my  [smiley=twocents.gif]...

-Shari

I had a spinal tap but for me, it was to rule out certain other diseases that are similar with the symptoms I had (I can't remember what diseases they were though - sorry).  

I agree with Shari -- if he doesn't know anything about MM and you have been diagnosed, I would go to a specialist.  

Best wishes,
Trina

Thanks for the input.
I am seeing a neurologist who dx possible MM from my MRI/MRA and CT angio.  I am having a brain SPECT and cerebral angio this week.  Dr. Steinberg has the films from my tests so far and will be reviewing them this week as well.
I was just curious about the fever part because my nero is pretty unreachable and if fever is a common byproduct of MM then I wasn't going to worry about it.
Just makes me mad that doctors who don't know anything about the disease speak as though they do.  I think it's hugely irresponsible.  That's why it's so important for us to educate ourselves and be well informed patients.

It's great Dr. Steinberg has your films.  Let us know what you hear from him about your diagnosis.

As far as I'm aware, fever is not a symptom of moyamoya disease.  Although, since your brain basically controls everything in your body, I guess it could be possible that the part of your brain that regulates your body temperature could be affected??

No one really knows what causes moyamoya disease.   Some people have theorized that an inflamatory process could cause it, but there are lots of other ideas out there, too.    I certainly wouldn't put a lot of stock in what the infectious disease doctor says -- he admittedly is no MM expert, and he is viewing your symptoms only from the perspective of infectious disease.  Sometimes doctors have trouble seeing things outside the perspective of their own specialty  ;)


How high is your fever?  I hope you get some answers soon.  Keep us posted!

Jenny (mom to Daphne  www.daphnestory.com)