Could it be anything other than ALS
Posted , 51 users are following.
Wondering if anyone has has similar issues and what it turned out to be?
started for me in March when I noticed to get muscle twitching all over my body arms, legs, feet, lips, buttocks etc. Some twitches were quite strong and would repeat 3 or 4 times rapidly then stop others were seen but not felt.
within a week one of my legs felt odd not sure how to describe it. Then the leg dealt weak but I still use it.
i went to the doctor who scheduled an EMG and NCS. The EMG was done on 2 muscles in the calf of my good leg for some reason and I was told all teats were normal. They suggested BFS. I was happy with that.
Nothing changed, in fact I now have thigh Atrophy - outer quad muscle. Doc confirmed the atrophy and is sending me back to the neuro. At this time I get a rush of muscle twitching in my upper abdomen after I cough or sneeze which is keeping my ALS fears on my mind. I can still walk, my leg gets tired fast and aches most of the time and the muscle has a burning feeling in it occasionally sometimes it even feels like it is vibrating. There also seems to be a tremor of my skin on the thigh, the wohle area between the knee and hip. Looks almost like the skin it shaking slightly from side to side. Not my leg shaking just the skin or muscle. I am also exhausted all the time and when I wake up I am mort tired then when I went to sleep.
My doc admits he is confused and says he has no idea what it could be - this obviously leaves me quite frustrated and scared. I asked him about ALS and he said he doubts it but can offer no other possibilities as all my blood work and tests are fine.
Hopefuls someone out there may be able to shed some light on this.
Thank you.
2 likes, 191 replies
kim2713 sean73
Posted
I'm in the same boat, I got sick aboutg 3 months ago and spent months going to my regular Dr and all she could come up with was Lyme however I only came back positive with one Titer. At that time I had joint pain and twitching.
Since then the twitching has gotten worlse, I have muscle atrophy throughout my body, my callves just wiggle.
My breathing has gotten pretty bad, and I've had some issues with swallowing.
I saw a neurologist last week for an EMG, mind you she was already against the possibility of als and her reason was simply that it was rare.
My left side was the start of all this, she only tested my right, and didn't check for bulbar issues though she knew I was having swalllowing issues.
Her reason for just right side, was she saw no issues on the right so she didn;t feel the need to test left. When I asked about the bulbar area, I was told to go to my regular Dr and get another referral. I was floored.
Needless to say I have contacted another Dr, unfortunately that means more weeks to sit around and wait. Per the other office an EMG should take min an hr, she spent 15 minutes on me before she ruled out ALS after checking just one side, and this was after she said I had alot of the symptoms.
Unfortunately as the patients we have to be on our game .
Good luck,
Kim
Angela0987 kim2713
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kim2713 Angela0987
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Angela0987 kim2713
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kim2713 Angela0987
Posted
Angela0987 kim2713
Posted
rachel90200 kim2713
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scott6672 sean73
Posted
Wednesday I am back at the Cleveland Clinic for advised consent for exome genetic testing.
Anyone else have a symptom suddenly stop for a period of time?
kim2713 scott6672
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OntarioDude sean73
Posted
I have had similar problems for the past few months:
-muscle shaking and ratcheting
-twitches and tingles
-cramps
-shortness of breath
-etc.
and they are all over my body. The worst is shortness of breath (my breathing muscles are affected now too) which sounds a lot like ALS doesn't it? I saw a top ALS neurologist and he ruled it out without a slightest doubt. He said he diagnoses 7 ALS patients a week so he's trustworthy. The thing is with ALS the nerves die way sooner than when the muscles show signs. In fact if one of your muscles is having "clinical weakness", the EMG picks up nerve problems in other muscles as well. That's why they test other muscles rather than the ones you may be having problems with. And trust me for the past 2 months I was also convinced it was ALS. It's very rare that the EMG lies and ALS is rare to begin with so a negative EMG is very reassuring.
Anyway, so they told me I have BFS as well. I'm curious though a) anyone here have shaky muscles? Like when you lift you leg or arm or bend over or move your head do you feel a ratcheting step-like pattern? b) anyone here started having these symptom a few weeks AFTER an MRI with contrast by any chance? (I do realize most people had MRIs after these symptoms started showing up)
kim2713 OntarioDude
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scott6672 OntarioDude
Posted
I have same symptoms which have more or less been in "remission" for the past 11 days after lots of muscle pain for the previous 3 months.
I could do lift my arms straight over my head and within 20 seconds or so they would start to shake. Movements were not fluid, sounding similar to your "ratcheting".
I have an appointment in March with who will be my 8th+ neurologist since my last one retired. The primary Dr I am working with is a genetic pathologist.
So far we're looking at a fatty acid oxidation or similar disorder. There is plenty of muscle but it just isn't converting energy stores into energy when needed.
I have had elevated adolase for awhile as well as glutarylcarnitine acid (sp??) and small buildup of glycogen in muscle fibers.
I also have zero of one acid that should be present. Dr says the result is clinically insignificant. However, this acid is the second most common acid found in the brain and is primarily responsible for neuron health.
A couple weeks ago just started genetic (Xome) testing so we'll see where that ends up.
Every symptom I have is also associated with ALS & MS
daiku OntarioDude
Posted
I was investigating why I had a never ending headache, and only after the first CT Scan the twitches came.
I thought maybe they could be the MGUS protein finding (pre-myeloma) but maybe it may be related to the use of contrast instead...
Symptoms are worst when I seat or try to relax....
I still have not found a way to relieve those
rachel90200 daiku
Posted
my twitching started after contrast as well, have yours resolved yet:? it's been 8 months for me
rachel90200 OntarioDude
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justin99738 OntarioDude
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look up gadolinium toxicity... could be linked to your mri... I have the shaky muscle movements and all your other symptoms + GERD and a bunch of other stuff.. one emg says nae to als so its not als. right now I feel like theres a hole in my back.. like my back muscles are numb but yet I can feel the touch. I can still lift things but it is harder. all my joints crack and snap. this has been happening for over a year now.. my back is getting worse. I didn't have anything out of the ordinary happen before this started. just a spider bite on my forearm that was never tested... it came back and went away and then stuff started happening. it really started with pain in the back of my head. I'm guessing the muscles back there.. and then the same pain/feeling started in my upper back muscles.. idk this all seems crazy. I am working but it gets rough.