Hi Marie, I liked what you said about this being a new chapter...,way to think positively! Also, I have always had low blood pressure, but have never fainted. Like you, I also had two babies and never had any complications. I've also given blood, but never experienced any problems. Correct me if I'm wrong, but I've heard if a person has MSA-C or MSA-P their blood pressure drops dramatically if they sit or stand from a lying down position, or stand from a sitting position, to the point of fainting. My neurologist always checks me for MSA, as if you have Sporadic Cerebellar Ataxia (which I do), your chances of it turning to MSA are greater. I was diagnosed 10 years ago with Sporadic Cerebellar Ataxia and thus far, I show no symptoms of MSA. ;o)
Hi Rose
I feel consoled.When the Neurologist says the words MSA you panic.I belong to the MSA society also.
I have been confused as I believe we know our own bodies..The Neuro said my blood pressure did drop but low blood pressure is the norm for me.My grandmother had it and she lived til 90.I fall over with loss of balance not fainting.This only happens if I move my head too quickly.
The Neuro only said MSA if he was pushed to give me a labelprob MSA-C.
Dad had early onset Parkinsons but I now think that might have been a red herring.Some cross over but a different cause.
The Neuro said it was definitely a CA of some sort.Ideopathic of which there are a lot of us.
The new chapter is me trying to feel positive.My mind says one thing but the body doesn't do what it is told-how frustrating.I am stuck between behaving and having my hobbies the old way and developing new ways to survive.
I am struggling with the adaption which is hard.
Marie
Hi Again Marie, Ataxia is so frustrating and challenging! I understand your struggle, but I admire your positivity! I attended the National Ataxia Foundation (NAF) conference (in the US) in Detroit, Michigan (I live in Michigan, only an hour away from where the conference was held). Anyway, it was great to meet people from other States as well as Europe (there were three people from the UK, where you live). i've never met anyone with ataxia face to face. The people at the conference had all the types and degrees of ataxia. I will post some highlights of what I learned when I organize the notes my husband took for me! Regards, Rose ;o)
Marie,
It does sound like we’re on the same path, an I too am concerned about how my caregiver will be affected. I can’t let this worry overtake my day to day life, but it’s hard.
Also, it’s my understanding that it’s the sporadic (non-hereditary) ataxia that often “turns” into MSA. Keep in touch with my progress, and take care!
And Rose, thanks for you kind words!!