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Debd4l

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There are good doctors in Philly which is where it says you are located..If they think you something more rare than ALS I would think they would refer you on to Mayo clinic or the like. Keep pushing, not everyone fits into a neat mold of neuro conditions. Certainly there are cases that are more complex and syndromes still to be defined etc. That is rare though. Good luck, if you are progressing at that speed you need to keep raising the flags with your doctors and push to be referred on if they have hit the wall.
 

4jcobb

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pa
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yes i am progressing very fast.. my temples are now starting to indent. also the space in between my thumb and finger are now dented badly.my back shoulders are denting now and my bones are sticking out in my BACK.. all my JOINTS POP SO BAD EVEN RIB CAGE. should i go to the er room i dont think they will help me.noone takes me serious.. it is painfully obviou something is wrong.. DOEs even cachexia happen this fast?
 

vickim

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Joined
Sep 20, 2012
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Friend was DX
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03/2012
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aaaa
I don't know only a dr can answer that, it could from an underlying illness. Can it be as bad as you say or are you over reacting. I can't imagine any dr not taking this seriously if it is as bad as you say it is. I don't want to dispute what you are saying but I am wondering.
 

sadiemae

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Sep 20, 2009
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Lost a loved one
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NV
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After my husband ignoring his sym toms for a couple yrs, we did go to the ER, and we told them we thought he had ALS. Within 20 minutes the Neuro told us we were probably right. He was admitted, and we left 7 days later with a D X of ALS. So, the ER took us serious.
 

Debd4l

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If this started after your tetanus shot did you or your doctor report an adverse reaction/event to the CDC? They take the complaints of reaction to immunizations and have information of the most common reaction types etc. They can probably tell you if any cases of cachexia occurred after or as a result of Tetanus immunization or anything similar..I think if you have atrophy moving at that speed it would be noticeable to your neuro and they would refer you on to a specialist..
 

JEB1979

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After my husband ignoring his sym toms for a couple yrs, we did go to the ER, and we told them we thought he had ALS. Within 20 minutes the Neuro told us we were probably right. He was admitted, and we left 7 days later with a D X of ALS. So, the ER took us serious.

So he had ALS symptoms for two years before being diagnosed? Wasn't it hard for him to move around after the first year?
 

fallinggirl

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Sep 21, 2012
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PALS
Diagnosis
06/2013
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US
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Oregon
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Medford
JEB1979, some people progress at different rates.
 

fallinggirl

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Messages
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PALS
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06/2013
Country
US
State
Oregon
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Medford
Ok... got a question. Is your family seeing this too? Why wouldn't they take you seriously if it's that obvious?
 
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