Hi Q,

Welcome to our MM family!
That runaround you dealt with is very common in the medical profession when dealing with MM. I have to agree with Moira 100%. It depends on how good your doctor is at treating this rare disease that decides how soon you’ll get treatment after your diagnosis. This is a
progressive disease, it gets worse over time and you’re always at risk for a stroke with MMD at any stage, so prompt treatment is so important! Delay in treatment is a particular pitfall we see due to lack of knowledge and experience with "the disease itself." That’s why we always urge a second opinion with a MM expert, one who deals with this disease on a daily basis. Unfortunately there are only a few MM experts in the country, but they are out there. Patients usually send the MM specialist their films to get their expert opinion and direct them on the correct path of treatment.
A great piece of advice is to learn all you can about this disease. If you arm yourself with knowledge, then no one can steer you away from the treatment that’s best for your particular case. The facts will speak for themselves, and that’s comforting in a world that doesn’t know enough about this rare disease.
Regarding your question as to the mental decline, that's so hard to say, because no two cases of MMD are the same because of each persons personal factors involved. It varies from patient to patient, but the possibilty of a stroke always exsists in anyone whose diagnosed with MMD and there lies the danger. With MMD, your arteries progressively narrow, so your brain lacks the proper amount of blood/oxygen that it so desperately needs, and the MM vessels that formed, even though they are helping with the blood supply, they are abnormal vessels and they are weak and fragile and at any time can rupture and bleed and cause a stroke and mental decline.
If you have any questions, please don’t hesitate to ask. No question is too small. We’ve all been down this road and understand. We’ll be happy to help you or a family member in any way we can.
You’re in my thoughts and prayers.
Mar