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Back from the Neuro...

PostPosted: July 30th, 2003, 12:54 pm
by Jenn311
Well y'all,

I finally broke down and went to the neuro this morning. I decided to go because I have been having problems with my knee for a while and then eventually noticed that one calf muscle was noticable smaller than the other. I didn't want to say anything before because I was afraid it might cause a backlash of people investigating their own legs :wink: . (no weakness though...)

She did all the regualar tests that I knew she would..testing for strengh, sensory changes, etc....tried to see any fasics, but they weren't noticable...She asked if I drink a lot of caffeine or take any stimulant drugs such as psuedoephedrin HCl. She said that stimualants and stress can cause the release of adrenaline, which are both neurotransmitters and will cause twitching. Hence all those stress-induced twitches! Then she measured my legs and the right was almost two centimeters smaller than the other. She said that she normally sees asymmetrical atrophy in the legs in people that have had back injuries, but I reassured her I had neither injury nor pain in my back. She had no explanation for the asymmetry, but maybe it is related to my knee problem. She is doing a lot of blood work, checking my ANA levels since I am having a lot of joint pain all over, just to check for Lupus. She said straight out, "You don't have ALS". She said typical BFS (I was suprised and glad to hear that she knew what that was!) Whew...load off my back.

She didn't do an EMG or nerve conduction test, and she said she wouldn't recommend either. She said that sometimes people come in twitching and want to have them done, and they always come out negative. She told me that some people even get so freaked out about their twitches that she sends them to the neuromuscular specialist, and they always come back with a diagnosis of BFS. She even sent one person to the Mayo Clinic because they wouldn't beleive it was BFS. But even the Mayo diagnosed it as such. She said that when someone comes in with ALS, they may have twitches, but they have never noticed them nor can they feel them! (She said if you feel your twitches it is BFS.) They ALWAYS come in with noticable weakness first. Then she hooked me up with some anti-depressants, Lexapro, which is a new one and apparently "weight neutral" (I told her I didn't want to go on them bacause I had gained a lot of weight on them before.)

She also told me that doctors are the worst for freaking out if they notice twitching...most doctors are only taught about twitching as a side effect of ALS and know nothing of BFS.

Well, I am glad I went! It sure is reassuring, and for all those people who are too chicken to me...You have nothing to worry about! Hope this helps someone.

Love to all, Jen[/i]

PostPosted: July 30th, 2003, 1:49 pm
by spb
Good news Jenn. You are a true supporter of so many people here and this sounds like it was a pretty good day. :D



PostPosted: July 30th, 2003, 2:29 pm
by Renae
That's great, Jenn! I'm so glad to hear that you had a successful visit and left feeling reassured! You are always such a great support to everyone here...I'm glad to hear you've had a good day!

Take care-
Renae :)

good for you Jenn

PostPosted: July 30th, 2003, 4:21 pm
Good for you Jenn, I am glad that everything went well, by the way my calf are slightly different as well, I have always been told the dominant leg can be a hair bigger.

Love Ya,


PostPosted: July 30th, 2003, 5:48 pm
by reneeintx

I'm glad you have some weight taken off your shoulders :) You're so supportive and reassuring to everyone it's your turn. I'm guilty of the "leg checking" I still think my knee looks weird.

My GP knows how freaked out I get about my body. When I went to see her about the twitches she KNEW I wouldn't be satified with her opinion and sent me to a neuromuscular specialist. At least he was with me for about an hour talking mostly about why I didn't have ALS.

Congrad's on your great appointment! I'm here for you along with all these fine BFSer's.

Take care fellow texan,

Renee :)

PostPosted: July 30th, 2003, 7:05 pm
by Jenn311
Hey guys,

thanks for your kind words....y'all are so sweet!

Renee.....I was thinking of you today looking at a chart of muscles in the human body on the wall...there were no muscles directly under or above the knee at all to atrophied....Be strong sistah! You are fine! Trust your neuro and you will feel at peace. Seriously, you have to remember that your chances of having ALS are very to zero. Try your best to enjoy your life, day at a time.

Love, Jen

PostPosted: July 30th, 2003, 11:01 pm
by reneeintx

You're great :D I'm glad you looked at the chart and thought of me!! I guess I just have a freaky lookin' knee. Oh well, goes well with my fine freaky mind. :mrgreen:

You're a fine chick.


PostPosted: July 31st, 2003, 8:01 am
by Dale
That's great news! Glad to hear that all went well.