Living with BFS: 3 Years and Counting

[holisticdriver]

Hi,

I've been here (about BFS) for over a year, never posted before (at least that I can remember).

I've been BFSing it going on 3 years now. I guess I'm going to be a lifer (that depresses me).

I think, I have it pretty bad. I take tegretol and it helps, but my memory is toast.

I love the names and ways you describe the twitches! I haven't found any posts that talk about itching. Sometimes I feel my twitches are so slight that it gives me an itch instead of a twitch. Does anyone else get them? Also, sometimes my feet and fingers tingle.

I have to tell you that I went to a neuro to figure out why I had twitches and spasms. She ruled out all the biggies...als, ms, parkinsons. She never figured out what was wrong with me though. No...I had to do that myself! I ended up on the internet, and many word searches later I found AboutBFS. YOU brought my diagnosis. Kinda p*ss*ss me off. Sorry I'm not inclined to swearing, but you spend a lot of time at a doctors office, all kinds of painful and weird tests not to mention MONEY and this doctor just said what it wasn't, turned and walked away!

Anyway...this post is a test. If it actually makes it to you, I'll post again.

Trish

 

[sendzou]

The memory problems you mentioned arent a symptom of BFS...they might be more of a complication, perhaps down to Anxiety/Depression?? over active mind maybe?? I know my memory has gotten worse over the last 6 month, my neuro has assured me that its linked with my Anxiety problems and that im "thinking too much" which in turns distracts from what im doing and focussing on and hence causing memory problems.

 

[JennFiction]

Hi,

About the memory problem...I use Tegretol, which might be part of the problem, but I also have vestibular problems which is a definate contributor to my memory. Vestibular problems has to do with balance, etc. I have "Benign Positional Vertigo". I get dizzy in certain positions.

Lucky me, eh? Two benign problems at once! Kidding aside...there is a treatment for the vertigo.

Tricia