Worried about stiff jaw and eye twitches

Paul G

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Hello all,
I hope you don’t mind me putting forward my symptoms.
It started last year with a stiff jaw and full ears.
it went away and then in March this year it came back. Very painful both sides.
Then one day I noticed eye twitches which progressed to legs and arms neck torso all over. It wasn’t severe but noticeable.
Then one day I woke with cramped arms and legs. All limbs.My knees are a purple colour and some mornings the knees and thighs were a little red and burning....that seems to have stopped.
The stiff muscles has been a constant problem every morning. It’s an ache that comes and goes all day. 3 months now.
one day I noticed the shin muscle was stiff and now I can’t lift my right foot on a heel walk. It’s not noticeable when walking and I may have a sports injury from that leg years ago. I feel fatigued.
Neck twitches happen occasionally and I find my throat quite dry at times.
Sleep is a problem and the muscles stiff and sore in the day really are quite sore.
my voice hasn’t changed and I don’t have a weak grip. Though I must say my arms are a little sore and fingers a little sore in the morning cramps.
Im having tests but to me it doesn’t look good. My wife thinks I have anxiety as I’ve had a stressful year.
 

Nikki J

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Were you seen in person by a doctor? If so what did they find on clinical exam? What tests are you having?

you mention a number of things that do not sound mnd related such as full ears discolored skin and soreness

once you tell us about your tests and exam we can answer better
 

Paul G

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Thanks for the quick reply.
my CK came back as normal.
I’m seeing a Rheumatologist this week.
perhaps a neurologist would have been more ideal but they are hard to get at the moment in the U.K.
 

Nikki J

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Rheumatology sounds like a very appropriate place to be seen for you. Please go with an open mind. Say these are my symptoms. What is wrong with me? Do not go with the mindset that you should be seeing a neurologist because you think you know what is wrong. Let the doctor do their job
 

Paul G

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Hi all.
my symptoms are a little worse from my last post.
I have a weak ankle (can’t walk on heel). Right foot after waking with very stiff shin 7 weeks ago. My legs ache in the day. Mainly thighs and inner thighs near knees and my feet feel cold.
I have small twitches mainly both legs and left neck. Some pain in the jaw.
I am still waking every morning with a
Stiff arms and legs some days worse than others. I feel weak walking up the stairs.

This morning I saw a private doctor for a quick 30 mins. She asked if I had lost any muscle in my thighs. I’ve lost 2.5 stone so I honestly couldn’t tell her. She had asked me to do an EMG. I want it quick. I want an answer.
It’s taking over my life.
there is a lot of aching muscles and sore knees.
my arms feel like the muscle has been pulled over night.
Will the EMG be a good test to have??
 

Nikki J

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please stay in one thread as asked in the pinned post.

the emg will show if you have lower motor neuron damage. Will you let this go if you are told it does not show ALS? if you believe the results then it will be good. You should know there are often non ALS abnormalities seen on emg too.

what did the rheumatologist say?
 

Paul G

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Ok. I understand. I’m just not getting better. The Rheumatologist didn’t really do a lot other than check reflexes and the same tests my GP did.
it wasn’t really what I expected.
I think she needed to be seen to get to the EMG test.
I don’t understand why my jaw and neck muscles are aching now.
The twitching is now and then in the evenings.
I just want to wake up and feel back to myself again. I think that’s how this is how the Doctors work.
 

affected

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Just doesn't sound anything even remotely like ALS - sorry it's taking so long to sort out. Please do work with your doctors and believe whatever directions they want to take with testing.
 

Paul G

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Hi All.
An update on my present ongoing situation.
I saw a Rheumatologist who looked at my weak ankle and wants me to have an EMG in the 5th Oct.
I ache every day with fasiculations.
mostly legs and buttocks, thighs. It’s a dull ache.
my neck at the back is also painful to turn my head. That has got worse lately. my jaws hurt.
my ankle is still weak but I can walk on toes but not the heel. (Right foot). I ache all over.
I guess the EMG will be an insight to tell me if Ihave this disease.
thank you for your kind help.
 

lgelb

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Sounds much more like a primary muscle disorder or a virus. You haven't traveled lately or been bitten, I take it?

I think the EMG will be reassuring as to ALS and may point the way to other tests.

Best,
Laurie
 

Paul G

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Hi Laurie.
i did visit Australia at Christmas. I’ve often wondered.
The Ache travels from jaw to legs.
I keep reading there is no pain with early symptoms of ALS and then the opposite.
it’s just a worrying time.
 

affected

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Still nothing like ALS which is great news.
Remember that EMG is a tool that is used to diagnose a huge range of diseases and injuries along with the clinical exam.
Good luck, but the kind of pains and aches you describe just don't line up with ALS.
 
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