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Old 07-24-2013, 11:52 AM   #16
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Join Date: Jul 2009
Posts: 15
ptm0331 HB User
Re: Losing muscle mass in tongue, tonsils normal?

Originally Posted by bny806 View Post
I also meant to add- I don't have the muscle locking/myotonia when I simply shake someones hand.. but if I clean something (with my hand on a sponge, towel in a certain position for a while), or if i move my feet inward (bending at the ankle) my hands and feet get "stuck" that way for a few seconds.. I don't have a muscle cramp per se, but it just gets stuck.. I noticed that first 4 or 5years ago... so if that is connected, i've had symptoms for that long..

Hi, bny I haven't read your posts yet but I just want to reply right away to make sure you read this ASAP. Thank you for your update, my symptoms are progressively getting worse and now my vision is so much affected :'( The Kaiser doctors are not helping much but I'll go again for an appt today.

Hope you will keep us posted please and if you find other patients with similar cases please tell them to share their symptoms here too if they found a DIAGNOSIS or TREATMENT :'( I can't die yet oh goodness please Lord

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4jcobb (09-14-2013)
Old 09-14-2013, 01:08 PM   #17
Join Date: Sep 2013
Posts: 2
4jcobb HB User
Re: Losing muscle mass in tongue, tonsils normal?

hi I'm having the same symptoms ..I hope you two are still here especially ptm0331. five weeks ago it started with neck pain and went to my back to my feet and hands to pelvis..I soon just starting to lose muscle mass rapidly. I lost muscles in eyes , inside of mouth my nose is flimsy and arm legs chest legs you name it, I have lot muscle there..I was 184 when I first went to doctors now I am 170 but i feel like I'm gaining fat and lose muscle. I been to a rheumatologist and all test were negative for lupus ra, Lyme etc. I also went to a haemotogist ,gatsro and nuerologist. neerologist was negative for both but I think he did the test wrong as the emg part he stuck the needle in to test muscles but never asked me to move..I thought I had to clinch my muscles??.

still waiting to hear from heamotoligist and gatsro.

reason for the haemotogist is ..the did blood work and I am anemic..but I have high good iron and b12, Also my protien level was high and they did a serum protein electrophysiology and I have a high gamma globulin polyclonal which I think it means I have a chronic body is fighting something..but they don't know what

I really need help..i feel like I'm dying but no one knows what it is..I am wasting everywhere..also I have twitching and tremors ..massive joint pain and I feel like all the cartilage in my leg is gone....please reply i will check this every four hours..I have three kids and a beautiful wife I need to beat this...

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Old 09-14-2013, 01:12 PM   #18
Join Date: Sep 2013
Posts: 2
4jcobb HB User
Re: Losing muscle mass in tongue, tonsils normal?

to summarize again I have

high protien due to high gamma globulin immuno
back pain
all my bones ache
muscle wasting everywhere..neck very small lose muscles on forehead eyes..mouth..tongue nose..chest legs arms feet hands
tremors twitching
joints feel like there wasting away

please help anyone..I hope it's not ALS..

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Old 09-15-2013, 02:53 PM   #19
Join Date: Sep 2013
Location: Tucson
Posts: 2
JodyI HB User
Re: Losing muscle mass in tongue, tonsils normal?

Hi! I am new to the health board and started 2 new threads but haven't gotten any responses. I have been falling the past 1.5 years, with increased weakness in lower legs. Fall regularly now, and wonder if it is ALS? Also, my diaphram has a hard time breathing and I get muscle aches around my torso. I thought it was my asthma but I am not weezy or anything, just tight muscles.

The results from my Neurologist thus far are:
hyper reflexes
positive EMG with "both lower extremities showed non-specific denervation of selective muscle patterns."

What does that mean??????

Also negative NCV study.

I can barely walk up 5 stairs to my house, and have a very hard time walking with any sort of incline. My muscles are too week.

I am currently waiting the results of my 3rd MRI.

Someone please help me understand the EMG results.

Thanks so much!

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