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gu1928

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Mar 22, 2014
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Learn about ALS
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Fl
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Parkland
I used to excercise on a regular basis
One morning two months ago I woke up with pain in my left leg .The pain was radiating from the ankle to the outer calf and i had been experiencing muscle weakness a week before this happened
.I thought this was some kind of sparin.Went into ER .The did an x ray and ultarsound for blood clot in the leg and sent me home asking me to go to orthopedic
The orthopedic asked me to use to RICE technique.There were cysts on my back.An MRI was ordered on my spine.A month passed without any relief and symptoms getting worse
MRI should disk herniatiion that would affect the right leg ( sciatic pain) which did not explain the left leg pain .An EMG was done on both legs and came out normal.
Another month after with no relief in pain I was sent for lower leg MRI which showed bone marrow edema in tibia and minute fluid in ankle ( within normal limits).No sprains,strains or stress fractures.
My pain is not localised to the Tibia its alll over the leg .On my last visit orthopedic observed muscle atrophy on my left leg and asked me to go back to Neuro.Within two months my muscle had atrophied by half inch in the calf and thigh.
Now my symptoms are :
Nerve like pain in the calf and back of thigh
.Pain in outer side of calf
.burning pain behind the knee
muscle twitching ( a lot of it)( not just i the affected leg but overall)
muscle pain in the leg
Also I feel a lump in my throat .Whenever I swallow a single morsel of food or a gulp of water I take many burps...this has been going for two years
I have an appointment with Neuro next week.
Did anyone have such symptoms ..which progressed so fast resulting to atrophy ..and diagnosed with als.Worried!
 
I am 36 year old ,mother of three kids
 
I have muscle spacticity as well..didnt know the word to describe until i read other posts
 
Please relax and get back to your neuro.

What you are experiencing sounds awful and must be frightening, but it doesn't sound the least bit like ALS - the pain you are having in particular is not experienced in early stage ALS as sensory nerves are not affected.

Let us know if you want after you see the neuro again, but your EMG was clean and a neuro has been seeing you during this time, so ALS is not under consideration.
 
Yes I sounds like you need to see your neurologist again. The symptoms you describe are not what I experienced. There is not any pain in the early stages of ALS. I am think that if your neurologist only checked your legs he/she did not think that your symptoms were anything close to ALS. I also think that he/she would have ordered more MRIs. Muscle loss is what you would experience in the early stages of ALS.

Rick
 
Thanks Tillie and Rick for the response.Rick I have a question was muscle weakness the first thing you experienced?Before anything started I had muscle weakness.Two months ago before anything started when i came back from work during evenings i would observe muscle weakness and my left leg in the high ankle araea and i used to tremble..Is that something you observe before pain and atrophy in initial symptoms of ALS?
 
I agree with Tillie; this does not sound like ALS.

Clean EMG = it's not ALS.

Clinical weakness is not something you observe sometimes.
 
Thanks for the response Dusty..I read in one of the posts that if its Upper Motor Neuron syndrome EMG cannot detect it...Is there a permanent cure for UMN
 
No, upper motor neuron signs cannot be detected by EMG, only by clinical exam.
But clean EMG says you don't have ALS.
But go back to your neuro and see if he finds any signs of upper motor neuron signs.
 
pain points away from ALS. The pain that ALS patients suffer from in not like what you have, it is after the muscles have completely wasted away, and they have pain from joints being pulled or pressure.

PAIN IS NOT ALS and you specifically talked A LOT about pain. sounds awful, but not ALS. don't waste time here, look at other options.
 
Hell eeveryone
I started physiotheraphy and and after 5 sessions i am finally able to walk but not without pain..My Lyme disease test came out negative.Muscle twiching has increased all over the body.I felt last week I had a similar episode of muscle spasm this time effectinng my throat muscle ..I feel muscle pull under the chin .Left jawline muscle spasm ..Left hand aches too..I have been to so many doctors family ,orthopedic,rheumatologist ,neurologist..
I feel if i go back to neurologist with another problem another area he might think i am crazy
Did anyone have this kind of spasm on under chin and throat muscles..
 
You wrote, ("I have been to so many doctors family ,orthopedic, rheumatologist ,neurologist. I feel if i go back to neurologist with another problem another area he might think I am crazy.") Do you think someone here can help you? You also previously wrote on 3/22/14, ("I have an appointment with Neuro next week.") So, what did he/she say?
 
I went to the neuro he said he would send me to cleveland clinic if rhematoogist thinks there is nothing wrong on the rheumatological front
The rheumatologits had ordered bone scan..scheduled in two weeks.blood tests were normal
 
waiting for bone scan and clean chit from rheumatlogist and then go back to neuro for a consultation/referral...but meanwhile the throat chin left hand muscle spasm started...not sure what to do..sometimes i think this whole system of going from one doctor to another and waiting for appointments and tests is so painful ..wish there was single payer system.i go to a hospital and i am taken care of completely ...There is ER but they put you through so much radiation make you a little stable and send you home...frustrated with the system and of course with my symptoms.
 
wow wow wow....I'm not trying to be rude but you are on this forum why?
 
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