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johnskip

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Aug 5, 2014
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Learn about ALS
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US
State
pa
City
philadelphia
Hi my name is johnskip and I absolutely pray everyday for everyone affected by als my story is I have been feeling major fatigue and had major weight loss and fasiculations felt widespread also having breathing issues when sleeping something keeps on waking me up in my throat I have been checked out for cancer multiple tests everything is clean I have been unable to put on weight no matter what I eat I lost over 40 lbs now my doctor has said go back to neurology 2 yes ago I got diagnosed with bfs my chest always feels cramped and my breathing wakes me up constantly at night I feel horrible and the last thing I want to do is to go back to neurology after seeing every neurologist almost in philadelphia
 
John, you've seen many neurologists and had several EMGs all over your body. Has anyone diagnosed you yet? Are you still seeing your psychiatrist?
 
What do your pfts show? and what did dr Heiman- Patterson say? She is one of the best of the best and last I heard you were going to see her
 
Thanks for responding atsugi and Nikki Dr terry heimann patterson diagnosed with cramp and fasiculation syndrome and I was good for a while until I got a cough and was so unusually fatigued and the weightloss and I can't sleep feels like something is awakening me in my throat so doctors cleared me of anything going on like cancer told to go back to neurology got a call into Dr patterson now
 
Any suggestion on taking anything to sleep
 
I also have a weird cramps feeling in my chest my Twin boys lay on me and I have to get them off I feel smothered
 
I take Magnesium and it helps sleep as well as cramps. Going back to Dr Heiman- Patterson is the best thing you can do for yourself
 
Thanks nikki I am going back she is supposed to call me today I'm scared to death to be honest and I had a pft done sitting all was good last week done by pulmonologist
 
The most concerning thing to me is my weightloss and I am force feeding myself and still not gaining!!!!
 
If you're still walking, talking, and using your arms and hands as you are, I really doubt ALS would be causing your weight loss.

Considering all the doctors and tests you've been through, I really doubt you have ALS at all.

If, indeed, you did have ALS these past two years, you've already outlived a whole lot of people with ALS.
 
I really hope your right atsugi and I thankyou for your response I have another question my voice has been hoarse for a while now and my breathing is affected it seems in chest area it seems to wake me up constantly lately could this be als mess up my breathing before voice or limb loss
 
I just want say anybody with als are very very strong and special people you guys are my heroes showing strength and love that is so special
 
What can i take I am getting g anxiety because I can't breathe right will kolonopin help
 
John you reported breathing issues when you first posted in 2014 you also reported taking klonopin. Almost 2 years later you report normal sitting pfts. While lying readings can pick up problems earlier consider the amount of time that has passed. If you had progressive respiratory onset for all that time do you really think this would be the case?
We can't advise you what to take for medication. That should be between you and your doctors. The breathing is not a new issue by your own reports. If it resolved and returned think about why it got better. Klonopin is as you say for anxiety. Are you anxious because of your breathing really? Or is it possible your breathing is an issue because of anxiety? We can't tell you, I just hope you will step back and review for yourself what happened these last 2 years and if you really think it is likely you have a very rare form of ALS onset, at a very young age, that has been undetected by a number of neurologists including at least one who is a leading neuromuscular specialist and after almost 2 years does not show up as any loss of respiratory function in formal testing. If you got better for a time add to that the unlikelihood of ALS remitting for that period of time
 
Oh I did review what happened these last 2 years and I had a steroid injection then I got a virus then I got all my symptoms and I did get 100 percent better and know I did not have als this is a whole different breathing feeling my voice weight loss and fatigue developed again Im in shock can't believe I'm in this position again hopefully I'm wrong like I was last year but I know that something is seriously wrong and all test medical wise is out except neurology
 
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