crafttam
New member
- Joined
- Jun 13, 2015
- Messages
- 8
- Reason
- Other
- Country
- US
- State
- Ia
- City
- Des Moines
First post here. Hate to bother you but no idea where else to turn. 49 year old mom of 5 year old terrified I may have ALS. Sure we all have a few twitches now and then. But around the first of May I developed a persistent twitch in my lower left ribs (never had one there before) and each time I'd slump at my desk or turn a certain way the twitches would fire off for 10 seconds or so. This continued for about a week and then they've gone away in that area. Around the same time the rib twitches came I noticed a twitch just to the left of the kneecap in my right knee. I sort of tuned that one out at first because the infrequent twitches I've remembered in the past have mostly been leg-based. However, the twitch in my knee became a lot of twitches in that right leg, mostly from the knee to the ankle with a few in the hamstring and close to the groin. I also get a few in other parts of my body (mainly the left calf, left knee and behind both shoulders but I'd guess 75% or more are lower right leg.
I became very nervous about ALS because I've never twitched like this before and I did do some strength testing - standing on my toes, heels, doing about 30 seconds of pretend jump rope. Somewhere around when all this was happening (I think just prior), I had also gone on a 1 mile walk (something I commonly do but haven't done much of since winter) and I noticed fairly prominent shin splint pain which is quite unusual for me.
Around May 10th I developed a very focused spot of pain in my right calf, directly in the back and just below the large calf muscle - maybe 8" up from the heel (I'm tall - 5'9" and about 125lb). Each time I'd try to do that 1 mile walk I'd have to quit early because the pain would become intense - almost like a cross between a bad bruise and a cramp but the muscle didn't get hard like a charley horse (which I've never had btw). I also experience pain sometimes when pressing the brake pedal in the car or other things that require me to press down with my toes. I get a lot of twitching in that area of the calf, too. I also started experiencing some twitching along the inside and backside of my big toe and into the arch of my foot. Also, when I stand for too long (i.e., 2 hours at a birthday party yesterday), my calf gets very stiff and tight feeling and I ache up into my hamstring and the base of my glut, more on the onside and backside of the leg. Not like sciatic pain.
Because of the aching in my leg my doctor had me tested (blood test and ultrasound) for a DVT. No blood clot. I had artery testing because she thought at first she wasn't getting a good pulse in my foot. No issues. I was freaking out with fear so she sent me to Univ. of Iowa hospital for an EMG on 5/22. It was clean - however it was only about 2 weeks into when the twitching first started.
Fast forward - the calf pain doesn't want to get better despite my giving up heels (I have an office job and am at my desk 99% of the time), I've not been walking much because of the pain, andd I'm frustrated and afraid. So doc orders an MRI of my calf. It does show trace edema in the soleus muscle where it connects to the plantaris tendon and bone so maybe that's part of the pain, but it's a very minor injury for the amount of time it's lasting.
I'm freaking out now because as of about 10 days ago I started getting an internal vibrating or very fast tremor feeling in the big toe of that foot that radiates down into the ball of the foot and as of about 6 days ago the vibrating is less but now I'm getting almost constant mild fasciculations in the bottom of the big toe and the ball of the foot. They're mild or non-existent when I sit down and elevate my foot and not bad when I'm in bed, but when I'm standing on the foot or am seated and am resting my feet on my toes (a habit of mine), they go nuts! I've read that twitches in muscles in use are worse prognosis.
I saw a neuro here in my city who supposedly specializes in ALS last Tuesday. He checked my reflexes and strength very quickly, read the EMG report and declared me ALS free. I called him again late in the week to talk about the toe/foot twitches but I don't think he's hearing me. He brushed me off and said "maybe it's a nerve in your back". I don't have any back pain.
I am terrified to the point I can't function. I'm a professing Christian and right now I'm really struggling with fear that is consuming me. I'm afraid I may have had the EMG too early. I don't understand why things keep getting worse in terms of the twitching, and why the foot twitches so much (and they're tiny twitches - not big things that move a toe) when I'm bearing weight on it.
So scared!
I became very nervous about ALS because I've never twitched like this before and I did do some strength testing - standing on my toes, heels, doing about 30 seconds of pretend jump rope. Somewhere around when all this was happening (I think just prior), I had also gone on a 1 mile walk (something I commonly do but haven't done much of since winter) and I noticed fairly prominent shin splint pain which is quite unusual for me.
Around May 10th I developed a very focused spot of pain in my right calf, directly in the back and just below the large calf muscle - maybe 8" up from the heel (I'm tall - 5'9" and about 125lb). Each time I'd try to do that 1 mile walk I'd have to quit early because the pain would become intense - almost like a cross between a bad bruise and a cramp but the muscle didn't get hard like a charley horse (which I've never had btw). I also experience pain sometimes when pressing the brake pedal in the car or other things that require me to press down with my toes. I get a lot of twitching in that area of the calf, too. I also started experiencing some twitching along the inside and backside of my big toe and into the arch of my foot. Also, when I stand for too long (i.e., 2 hours at a birthday party yesterday), my calf gets very stiff and tight feeling and I ache up into my hamstring and the base of my glut, more on the onside and backside of the leg. Not like sciatic pain.
Because of the aching in my leg my doctor had me tested (blood test and ultrasound) for a DVT. No blood clot. I had artery testing because she thought at first she wasn't getting a good pulse in my foot. No issues. I was freaking out with fear so she sent me to Univ. of Iowa hospital for an EMG on 5/22. It was clean - however it was only about 2 weeks into when the twitching first started.
Fast forward - the calf pain doesn't want to get better despite my giving up heels (I have an office job and am at my desk 99% of the time), I've not been walking much because of the pain, andd I'm frustrated and afraid. So doc orders an MRI of my calf. It does show trace edema in the soleus muscle where it connects to the plantaris tendon and bone so maybe that's part of the pain, but it's a very minor injury for the amount of time it's lasting.
I'm freaking out now because as of about 10 days ago I started getting an internal vibrating or very fast tremor feeling in the big toe of that foot that radiates down into the ball of the foot and as of about 6 days ago the vibrating is less but now I'm getting almost constant mild fasciculations in the bottom of the big toe and the ball of the foot. They're mild or non-existent when I sit down and elevate my foot and not bad when I'm in bed, but when I'm standing on the foot or am seated and am resting my feet on my toes (a habit of mine), they go nuts! I've read that twitches in muscles in use are worse prognosis.
I saw a neuro here in my city who supposedly specializes in ALS last Tuesday. He checked my reflexes and strength very quickly, read the EMG report and declared me ALS free. I called him again late in the week to talk about the toe/foot twitches but I don't think he's hearing me. He brushed me off and said "maybe it's a nerve in your back". I don't have any back pain.
I am terrified to the point I can't function. I'm a professing Christian and right now I'm really struggling with fear that is consuming me. I'm afraid I may have had the EMG too early. I don't understand why things keep getting worse in terms of the twitching, and why the foot twitches so much (and they're tiny twitches - not big things that move a toe) when I'm bearing weight on it.
So scared!