Status
Not open for further replies.

zny444

Member
Joined
May 15, 2006
Messages
14
Reason
PALS
Country
US
State
nj
City
north brunswick
Just got my test back for Lymes and guess what... another NEGATIVE! I was really hoping it was going to be positive... I can't live like this! The freakin twitching now is still in my calfs and slowly creeping up to my butt and all over at times. I looked at my calf last night and the thing looked like it was infested with little critters running all over under my skin. To top it all off I didn't even feel them... just saw them! I'm also having cramping of the muscles in my thighs, calfs, feet and some weird pains in my forearms and hands! I can't take it anymore! Four neuro's (2 from universitys), 1 GP, 1 pain mgmnt, 1 ortho, 1 lymes/cdc and no freakin answers! If this is benign why do I see atrophy in my right calf muscle and why the cramping?
I was feeling good for awhile ignoring everything but, the minute I concentrate on something else, these horrible twitches pull me back. I don't know what to do next! I'm still having severe left butt pain that radiates into my groin, severe calf twitching (that never lets up), and now lovely cramping! (I'm p1ssed!)
 

spud01

Active member
Joined
Apr 4, 2006
Messages
37
Reason
PALS
Country
US
State
Maryland
City
Millersville
Dear zny444,
You know you mentioned butt pain that radiates to the groin. That doesn't sound like ALS. Have you had an MRI of the spine, specifically lumbar, maybe what you are experiencing is a sciatica. That pain can be very painful. And like everyone says, the muscle twitching could be almost any cause. Did the neuros think your muscle was getting smaller, maybe it is just your mind playing tricks on you. I know for a fact that the twitching can increase with stress and you focusing on it. Try to find a neuro who will do an EMG for piece of mind. There is also a support forum for benign fasiculation syndrome, and it is amazing what all the pain that syndrome can cause.
I hope your feeling better soon. I hope you can get support from your family through this rough time, I know it is very difficult awaiting explaination, and awaiting all the test results. I know it is easier said than done, but try to relax, and enjoy this holiday weekend.

Terri
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi zny. Most fasciculations you won't feel. You may feel them in the larger muscles in your thighs if they get up there. Ask your Doctor about Quinine for the cramping. It worked for me and as an added bonus you won't get malaria. LOL. Not making fun of you but you have to keep your sense of humor. It is difficult not knowing and I've seen people here tested for Lymme disease half a dozen times before getting a positive. Certain labs in the US get more positives than others but you don't know if they are using the same criteria or if they are fudging the results. The pain in your butt is a strange one. Perhaps you could move your wallet to the right side to see if it goes away. Sorry about that one but I couldn't resist it. Have you had an MRI to rule out sciatic nerve problems?
 
Last edited:

zny444

Member
Joined
May 15, 2006
Messages
14
Reason
PALS
Country
US
State
nj
City
north brunswick
Hi guys thanks for the comments.... I have had an mri one of the lumbar (b4 the pain in Jan) and one for cspine. All came back pretty much normal. Sorry for venting before, just getting a bit p1ssed now. Your right... lets all enjoy the weekend! Thanks guys!
 
Status
Not open for further replies.
Top