Joanne's Story-BFS

BFS Online Support Group

Moderators: JohnV, Arron, garym

Joanne's Story-BFS

Postby Joanne on December 13th, 2002, 8:27 pm

I've posted here a few times but just felt like sharing my story.....It started July of 2001 when i was on vacation, woke up one morning and my finger started twitching....and would not stop, then my thumb started twitching and would not stop...did not think much about it just thought i slept wrong or did not get enough sleep....well this went on for awhile until the side of my nose started twitching..well i thought this is weird, then i had a lump removed under my arm which i thought was cancer and was totally scared, turned out to be benign...well thats when the fire works began....the next day i was fluttering like a butterfly my whole body was twitching i felt like blinking lights on a xmas tree. I lost it, i looked up twitching and well you know......i dx myself with als and had a panic attack....could not eat, sleep...lost 10 pds in aweek. My hubby was able to get me in with a neuro in NY, which i live in VA, but we drove back home to see this neuro...she looked me over did and emg for my own sanity and said i am fine.....just stress and anxiety and told me to take bulspar....I was so stressed i felt like bees were stinging me in the middle of my back and everytime i would try to fall asleep my body would jerk voliently. Well i took the bulspar for about 3 weeks, i did not like the way it made me feel, so i stopped. I was then calmed down enough that i started sleeping and slowly started feeling better......
Since this has started i have had burning feeling in my calves, which last about 2 months and has not really come back, pins and needle feeling in different places, hand stiffness and body aches,I have felt a vibration in my whole body and especially my legs, that was worse in the beginning, i rarely get that now. I have twitched every place...i mean every place :oops: I have had a tremor on and off in my thumb after using it for a period of time. I then dx myself with parkinsons.
After having these sx i was able to get an appt with the als specialist at John Hopkins, he did and extensive examine and did blood work to see. he asked me what i was afraid of...i said parkinsons and he said what about als..i said i think i am over that now...he said well you don't have either one. He told me i have bcfs and he also had it and he knew exactly how i felt and could relate to most of my symptoms...he should me the mayo clinic study and said come back in a year but i was fine......well it is a year since i've seen him and am getting ready to go back, just one more time for re-re assurance.
So you would think after that i would be convinced....there is always that little person in the back of my mind that says, well he did know about this sx or that sx....
So today i still twitch but i barely notice them, only when they are in my fingers do i really take notice....sometimes i jerk, but its not too bad. I still get pins and needles but it has become less, the burning sometimes comes but last for a second not days....oh yeah i once had the back of my head burn for about 2 weeks straight...thats gone too.
Right now what bothers me are the finger twitches and the morning stiffness, and when i use a muscle like my thumb the shake or tremor and sometimes i just feel shaky inside but my hubby says he doesn't notice it but i do. I guess if i had to evaluate myself since this whole thing started i have not gotten any worse, my sx just change and it seems to come in cycles for me....like i flare up every 6 weeks or so...then it calms down again...of course i still get worried, some sx make me worry more than other. But i am very thankful this holiday season, because if you would have asked me when this whole thing started where i would be today i would have thought i would be disable by now...seriously i thought this would have progressed to something horrible.
Sorry to ramble, just felt like telling my story. Maybe someone can relate.
Joanne
Joanne
Member
Member
 
Posts: 28
Joined: October 31st, 2002, 9:10 am
Location: Manassas, VA

Postby Arron on December 14th, 2002, 10:02 pm

Joanne girl, can we relate? Oh man we can! I too get the tremors after using or straining a muscle and and I get the shakes and jerks too and my whole scenario started with a single twitch in a single finger, then another and then everywhere, exactly like yours started.

Your story will surely help many other's that read it and it is because more and more people like yourself, that come forward and share their experiences, symptoms, doctor visits and so on that help everyone else relate and compare to what they are going through. Thank you and I hope you are getting good, info and help in return from this great site of John's. It has been a god send for me too and that is why I am on here so much, putting back what I took. :-)
Arron
Moderator
Moderator
 
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: No registered users and 7 guests