I'm just wondering what other tests people have had due the medical community not believing our symptoms are related to Chiari.
Like the 2 neurologists and one of the neurosurgeons I've seen just want to treat me for migraines and I had one neurologist tell me and I quote "you have migraines, I have no idea why you face goes numb and tingles and everything else is caused by the Topamax" Even though the other "stuff" started at least 6 months before the Topamax. That was the neurologist at Mayo in Jacksonville told me. The neurosurgeon didn't do anything other than make me wait for an hour then just read me the neurologists note.
Both those docs also told me they don't know much about chiari malformation.
My PCP has now had me do 2 MRA's on my carotid and my circle of will and also ordered an echocardiogram. They want to find something else other than what is very obviously the Chiari.
My mom who is a nurse has wondered why they haven't tested me for MS or ALS which have very similar symptoms.
Sorry for being all over the place, meds are kicking and I really can't maintain a true thought process.
So if anyone has been tested for those and have any come back positive in addition to the chiari?
Thanks Phaedra