Hi
I don't post that often but I read a lot of posts.
I recently had my appointment with Dr Guanti who has referred me to another Neurologist as I have swelling on the brain and could have Multi Sclerosis as well as SCA6. I wondered if this was common or I'm just a little bit unlucky!
Thanks
Julie
Aw that's bad news Julie.. I hope you dont need lots more tests. It must be very difficult to stay positive at this time.. so much stress that just makes everything worse. I find exercise on my wii fit machine keeps me focused but whatever suits you, do keep going.
Hugs, Patsy x
Hi Julie - From what I know, MS and Ataxia are very similar. A 2nd/3rd opinion is a good way to go; also, you might look up Cleveland Clinic, Mayo Clinic, or some other reputable site to see the similarities, differences, etc.
Also, Patsy mentioned the extra stress that this can cause. I’m very sorry to hear this; just FYI, if you’re interested, there is MS-focused yoga and seated-cise, which someone just posted recently, that can be a good and healthy way of stress-relief.
I dont know why but tears weld up in my eyes as soon as I read what is going on with you. My heart goes out to you …wishing you the best
Neurodegenerative issues are so complex and misunderstood.
jaime
i've had SCA since the age of 14..I'm 29 yrs old today.. the first thing IS TO STAY POSITIVE..IT'S HARD TO DO I KNOW WHEN U FEEL SCARED OF WHAT YOUR FUTURE COULD BE!! let's remember in your case it's "swelling" so it could be that and there are medications to take the swelling down....IF it turns out to be a neurological disease then there are ways to deal with it, its all internal and perception becomes your reality.. GOD IS GRACIOUS!! THE GOSPEL HAS ALL LIFE LESSONS YOU'LL NEED IN YOUR JOURNEY..
FOR SO LONG I asked and complained WHY ME LORD?!!!..it kept me from moving on with my life and depressed me to the point where I almost lost my sanity...DON'T BASE HAPPINESS AROUND CIRCUMSTANCES THEY FLEE AWAY!!! REAL JOY COMES FROM THE HEART AND NO DISEASE, DOCTOR OR BAD NEWS CAN STEAL YOUR JOY!!!
MAY OUR LORD JESUS CHRIST BE WITH YOU ALWAYS, AMEN!!
Hi Julie!
Whatever the outcome, controlling stress can have a big influence on symptoms, we all know that for a fact. With your family history you’ve most likely seen first hand how best to achieve this. Staying positive is a fine balance of emotions. Very best wishes xB
Thank you all for your kind responses. I have always been somebody that sees the glass is half full but the last couple of weeks have been quite challenging. I'm very lucky, I have an extremely supportive husband and family which really helps.
Thanks again
Julie x