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Posts (3)

Mar 29, 2018 · #MayoClinicNeuroChat about Aneurysms and 3D Modeling in Stroke & Cerebrovascular Diseases

Hi @colleenyoung, I appreciate so much you letting me know about the chat #Mayo Clinic Neuro Chat, but I just came across it today! One of these days That will figure it out, but it is fabulous to hear from others who are going through similar journeys asI did. Now that I have spent 18 years figuting out my Cerebral Vasculitis!!!
Now It seems that I have gained about 60 pounds within the past year, yetvI always still
eat clean and I cut out all sugars and carbs. Have you heard this from others? Cause? Thank you, in advance, Terri Needle

Jul 11, 2017 · #MayoClinicNeuroChat about Aneurysms and 3D Modeling in Stroke & Cerebrovascular Diseases

I was diagnosed with Cerebral Vasculitis of the brain following my first major stroke in September,2000
followed by 7 years of going to and from every Neurologist here in Scottsdale, Az and also Phoenix. I went through every MRI, x-ray, blood test , Cardiovascular scopes , s different Spinal Taps etc. I was even misdiagnosed with MS by the head of the stroke Dept at Barrows and went through 6 months of these shots, while simultaneously taking morphine to TRY to help these horrific migraine-like headaches which I
woke up with, and lasted all day. I finally got to go to Mayo to a Dr Timathy Ingalls who specializes in Unrezolved Strokes, and he was fabulous and so brilliant and kind. By this time, I had already suffered and survived 7 major strokes and lived in terrible pain because all the Neuroogists said that until I
found what caused my strokes, they could not stop them!!! I had been misdiagnosed with M. S. but after 6 months , we discovered that not it! I also had many TI A’s in those years! Dr Ingalls
reached the diagnosis of Cerebral Vasculitis after seeing me 1time / month for 4 months and consulting
Via satellite to the other Mayo, using all my test results gathered during the previous almost 7 years
and then my insurance would no longer cover him, so I went for a short time to another Dr in Scottsdale,
but after some time I did not like “being talked down to” and being told that he would talk and my
questions were squashed!! After spending 7 years getting my DX did not mean my headaches were gone,
and I felt better! I feel “knowledge is power” and I still did not feel good even with the morphine but now I
was put on Plavix and some other Meds at Mayo but I DID switch to one of the other Drs in the
practice, Dr Constantine Moschonas, who I love and respect so much!! He is THE BEST and I still see
him and have come a long way. Many things have contributed to my improvement, but anytime I feel a little low, Dr Moschonas reminds me that I am ALIVE and functioning to MY best capabilities and
he reminds me that ANYONE who does not love me for “me ” as I am is not my friend!!!
Don’t ever forget that “you are your best advocate” ! I speak from my experience and the last 17
years, and I DO feel the best since my first stroke: ) it hasn’t been easy for Me or my family but it has
been worth it!!