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KimT

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re: Ear Knocking & Eyes Twitching, PLEASE HELP!

Hi Paddy,

Some of us have discovered that unusual symptoms accompany ALS. Others have not. Sometimes the other symptoms are something other than ALS and sometimes they have no known cause. That is something your doctors will have to figure out.

My first suggestion is to find a good neuromuscular specialist to handle all ALS-related issues.

Regarding your ears, it might be beneficial to see an ENT. I had a lot of swallowing issues and, what I thought were breathing issues. Most of it was related to severe acid reflux.

I would absolutely say a full pulmonary function test is necessary.

We are here for you.
 

swalker

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re: Ear Knocking & Eyes Twitching, PLEASE HELP!

I am sorry to welcome you here.

Tinnitus is usually a ringing in the ears. Some treatments can moderate the impact of tinnitus, depending on the underlying cause. I recommend that you see a specialist to help find out what the cause of the tinnitus is. They should be able to recommend a treatment.

As an example, I have Meniere's disease, which can cause very significant tinnitus. I can control that tinnitus to some degree adhering to a very low sodium diet. I do this under the supervision of a doctor and would not recommend anyone else do so unless they are medically cleared for a very low sodium diet.

Steve
 

Paddy1990

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re: Ear Knocking & Eyes Twitching, PLEASE HELP!

Thank you for your warm words guys, i really dont know what to do, i think First of all i Need to accept the Situation. Its very hard, i think its the Hardest thing I’ve ever had to do. On monday i have a pulmonary Test and then I will go the next step. I have a lot on my mind right now and ive become a lot of information papers.
I will try some to relax the muscles, maybe it will help, I will ask my doc for baclofen.
Sorry for the short answer but I really don’t know right now what to write, but I enjoy every comment and help.
 

sassy

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re: Ear Knocking & Eyes Twitching, PLEASE HELP!

Very sorry about your diagnosis. Hang in there......it is a scary time but the folks on this forum will help guide you-- you aren't alone...

Sassy
 

Paddy1990

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re: Ear Knocking & Eyes Twitching, PLEASE HELP!

My fingers Are moving on my left Hand without doing something, is this a Symptom of ALS or is this beacause im so depressed Right now ??
I also Mentoning that my left knee is hurting, But for the Moment im walking normaly, it feels sometimes like a cramp in my feet, But it is Not a Cramp, more like a pre cramp feeling, :-( i Hope this Stays for a While and don’t get worse.

Can i do something about it?

I just started to take rilutek.
 
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Clearwater AL

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re: Ear Knocking & Eyes Twitching, PLEASE HELP!

Paddy, your last Thread was closed on 1/26/19.

Within just two weeks were you able to get an EMG to confirm your diagnosis?

You were in the hospital for 11 days, was that related to your previous posts?

Help us understand from your first Thread, which was closed, to a rather
quick diagnosis of ALS.
 

Paddy1990

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re: Ear Knocking & Eyes Twitching, PLEASE HELP!

I had an suspicion since December by an neurologist, But it was not confirmed. I needed to wait for a hospital Date to do a Lot of Testing like head and neck scan, brainwater was taken from my spinal, my nerves been tested with Electric shocks und some other strange and painful testings. They told me Its ALS, But i can also do a Second test in a Special Clinic in Berlin to be very shure. They also said that some Test Results Needs a few weeks because of Labor, Thats Why i have another Date in this Hospital. But i also thought before the testing that i may have it because of my symptoms & for me its clear now. Thats Why i think i dont go to berling, i rather fokus on future preperation.

I dont know if i answerd everything you ask. I dont know exactly what EMG is. If its Brainwaves, they also did it.

Maybe someone can help with my previouse question ?
 

KarenNWendyn

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re: Ear Knocking & Eyes Twitching, PLEASE HELP!

Paddy, I’m sorry you find yourself here and that you have had so many uncomfortable and worrisome symptoms.

Many of your symptoms are not typical for ALS, which is why we would encourage you to get another opinion from a neuromuscular disease specialist.

Pain, numbness, burning, thumping in the ears, and eye twitching would not be expected in ALS, particularly in a young person just diagnosed. ALS typically starts in one region (for example a leg or hand) and spreads over time to involve other areas. Pain usually comes later in the disease as a result of being unable to move and muscles not being strong enough to support the joints. The exception is muscle cramps which may occur early.

Fingers moving on their own doesn’t sound like ALS unless it’s from a spasm.

Brainwave studies are not typically done in ALS.

EMG is a test where needles are placed in your muscles and electrical activity of the muscles is measured. It is an important part of the evaluation for ALS.
 

affected

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re: Ear Knocking & Eyes Twitching, PLEASE HELP!

Sorry to see you here Paddy. I agree totally with Karen that you definitely need a second opinion from a neuromuscular specialist, especially since you have so many non-ALS symptoms that seem to be your main issues.

I think it is hard for us to answer your particular question as it doesn't seem related to any ALS symptoms we have dealt with here.

Maybe your specialist that diagnosed is the best person to help you.
 

Paddy1990

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re: Ear Knocking & Eyes Twitching, PLEASE HELP!

Ok, maybe its a good idea to be checked again.
Beacause i really don’t know what to think right now.

EMG been done, 2 times, beacause the first result was so bad, they told me to relax, but i thought iam... so they did it twice.
 

Nikki J

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re: Ear Knocking & Eyes Twitching, PLEASE HELP!

We advise 2 neuromuscular specialist opinions for everyone. It is especially important if symptoms are atypical or the person is young.

What did your emg show? If you post the charts and the summary ( which I know will be in German) with your name and other identifying information removed we could perhaps understand better
 
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Natascha77

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re: Ear Knocking & Eyes Twitching, PLEASE HELP!

I probably do not believe what you are telling people here. Really now? You already know that some here from Germany read? I'm just saying dgm forum .. Is there something going on with you? To claim here that you have ALS, a joke .... I can not believe it ..
 
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