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Nikki J

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Original poster as Elaine said this does not sound like ALS. Taking your comments about cartilage at face value: none of my family with ALS had any cartilage issues even at the end their noses and ears were intact. Whatever is wrong it does not sound like ALS and no matter how many times you post we can't help you any more. olly tried very hard and posted lots of other possibilities but you need you doctors to sort this out
Good luck
 

4jcobb

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i dont mean to keep asking questions knowing how much those diagnosed with als are suffering. i still might have als myself but you guys are so supportive and helpful its hard to wanns go anywhere else. i just had a mri of my neck and wont the the reports back until maybe tonight or tommorrow. i had a ct scan of my of my stomach and ct of my brain they cant find nothing wrong EXCEPT they found something in my kidney but its too small to know what it is. i had a chest xray and neck xray twice each and mri now of my neck . Is there anything if they dont find something that would cause me to waste. does cachexia affect all the lean mass in your body? including forhead throat and mouth. i even feel like my mouth has shifted and now my bottom lip is leaning against my bottom teeth. im sorry to keep bothering you and thankful for any answers . i just have no whereto go except

that im anemic , i have 1.9 on my gamma gobulin protien test which suggest a polyclonal inflammatory so i can lean towards cachexia but i can eat food just find .. i know cachexia eats through your leanmass but it says also signicant loss of appetite but am eating just fine i think..i feel crap bothering u guys over and over i really do
 

4jcobb

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can someone please help..my mouth is wasting... my teeth are mowing moving forward and my face is almost bones..I can now sqeeze my knuckles and there squishy..I think Its the tendons I'm pushing on..no doctors have answers for me..I look at my family and I'm just so dad and disgusted on How I lived my life..can anyone please help me..is there anything anyone can think of that would cause systemic muscle wasting in every part of my body ..nothing is preserved
 

vickim

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I don't think anyone here can help you. You are going to have to find a dr that will listen to you and see the same things you see. If they have said cachexia, I would look at that. It is a life threatening condition.
 

skipper66

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Please remove my comment.
 
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olly

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4jcobb.
Did you see a doctor as advised?
I will send you a message and try to help but you must be willing to listen to me.
 

olly

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Skipper,i am appalled by your comment it was below the belt....you should be ashamed!
 

skipper66

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I tried to remove my rude comment. Hope it came off when I tried to edit it. Wasn't sure how to get if off. I won't comment any more on his/her posts.
 

skipper66

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Sorry 4jcobb,
Will keep my opinions to myself.
 
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olly

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I did report it to david already.
You should think before you post ....that was just plain nasty ....don't contact me again.
 

4jcobb

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yes I been to the doctor over 20 times..I been to a nuerologist, haemtologist, gastro doctor and rheumatologist. I'm going to get second opinions from all of them..I'm wasting really extreme olly. thank you so much for your kindness.. do you think I could be dying olly? ill listen to whatever you tell me.. I have wasting in every part of my body.Every! only blood test that have been high are high protein..which was a high gamma globulin level(polyclonal) .i am anemic 11.5 hemo, semi high glucose which I am retesting and cpk was 309 but it was right after emg ..I retested then it was 176. I been told by all it might stress and it's not.. severe twitching and atrophy like there's no tomorrow Everywhere. it occurred at once . could it be mercury poisoning?
 

johnnyliverpool1

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yes, you hit the nail on the head.......deffo mercury poisoning...it addles the brain...johnny
 

olly

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4jcobb,i will message you.
 

4jcobb

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I have one last question and I will ask this topic to be closed until I am diagnosed with something.... I told every one I have systemic muscle loss..in my neck forehead ,butt,chest,legs,arms,thighs every body part in my body. and there all going at once .i have widespread twitching that does not stop.. I also have noticed my bones are 100 percent starting to shift ..my arms and legs.i lost all the cartilage in my nose and ears and arms and legs. is there just maybe a small chance this can be Als.. or a variant of it . is it safe to say 100% percent this is not Als.. even when I make a frown my face is shaking showing the missing muscles.. I did have a emg which was clear but I don't trust the guy who did it. i have weakess and I am weaker then I was before I lost the 15 pounds of muscle but I can stil run jump, write push pull, lift weights which are ten punds lighter then normal. I can pretty much do anything.. do I have one of the rarest disease known to man , more rare then Als? just wanna make sure I can rule this out or maybe not yet
 

vickim

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I think you can cross it off your list. It would not attack your body like you are describing. I hope you do find out what it is and it is curable.
 
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