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Trevor49

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Hi,

Last August 2015 I experienced things happening in my spine and in March 2014 I was diagnosed with Dermyotomositis. I went into the hospital and had a rash and they treated for DM. Jan 2016 comes around being on sort of drugs but there was no conclusive evidence that I had DM. Normal blood etc. Hands were getting weak and legs are were already weak but went to neuro in Feb and he noticed changes on the emg but concluded DM. April 22 2016 my legs and arms are weak and problems with swallowing that started in Sept 2015 my neck is stiff. From April 22 my muscles start rapidly getting weaker and Ive losing weight. I have to sit high up to get off a chair. 3 weeks ago I fell on the front steps and my son had to help me up. week and half ago I fell straight forward getting off a chair. Presently I have rounded shoulders can't put on weight, lose breathe when moving and the skin on my arms is just hanging there. My fingers and hands are very weak as with my arms. I can walk a little. My wife and son believe its DM and my neuro is away until Aug 2. My family doctor is useless. I go see a Rheumy tomorrow that put me on prednisone which I've been on for over two weeks but has done nothing for me. He says he doesn't think its ALS but not sure. I have issues getting out of bed. I have pressure sores on my but where I have no more muscle and elbows where the skin is just hanging. I down to 150lbs for 180 and tryimg to eat but no weight gain. everyonr\e is pushing me to walk and exercise but I can't hasrdly move and getting worse. I'm totally lost and pray everyday. help
Trevor
 

starente15

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Hi Trevor,
You listed yourself as Diagnosed 12/2015 but that relates only to an ALS diagnosis as far as I know, which you currently don't have.

August 2nd is right around the corner. You should see a neuro to get their thoughts and ask more questions of the rheumatologist.
 

affected

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Trevor I carefully read back on your history.

You have been suspecting ALS for SIX YEARS.

Please, we need to be taken off your itinerary of anxiety stops.

You still do not have ALS symptoms.
 

Lkaibel

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No one spends six years with symptoms that lead to an ALS diagnosis. Does not happen. Whatever you have sounds sort of wretched, but ALS no.

You may be ill and we feel bad about that, but people here are terminally ill or caring for those are are. That's not you.
 

Trevor49

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Diagnosis
12/2015
Country
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You are right I have been worried about Als for years snd I don't want it. But how do you explain the muscle loss and twitching I'm experiencing plus progressive hand/finger muscle loss. I went got acupunture and see commented on the atrophy if my muscles of arms and legs. I had a friend hat had als and I had some symptoms that did warrant als. I've worried about this for years. But with the twitching, serve weakness, muscle loss is a concern. I m bed ridden and have sores on butt as there no muscle on butt. I have loss muscle in my face and can only chew for a little and Cdn only eat liquids. I don't want to feel like this and I was going to stay away from this site and not think about this but my body has taken over. I'm sorry but this is what is going on. I will ask the rheumoid questions but I do need to know what is going on with my body and it's scary. I not being insensitive to anyone but I do have anxiety issues plus what is going on with my body .

Sorry Trevor
 

affected

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Surely in six years you have seen a neuromuscular specialist and had an EMG.

If it isn't ALS then that's our limit - we aren't doctors, but we know ALS.

If you are as debilitated as you say, then you should be at the doctors. Honestly, we are strangers on the internet and cannot see you and examine you - get to the doctor immediately if things are as bad as you report. Change your doctor if he/she is useless rather than complain about it.
 
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