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jklb234

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Joined
Sep 12, 2012
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Learn about ALS
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ca
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rsm
Hello and thanks for reading this. Ive lurked on these boards on and off for 2.5 years since the weakness started. Ive read all the stickies and countless threads.

For 2.5 years ive had issues with weakness and muscle loss (universal all over body). Ive been to several neuros and had all the tests done including emgs including muscle biopsy. No ALS and that is good but I'm still in pursuit of answers. Ive been told i need to see a psych ofcourse which is always the default button, been there and done that, im in a great place mentally. Been to RA, pulmonologist, cardiologists, endocrinologist, infectious disease and nothing has been found for the most part.

2.5 years in and im still on a downward slide with muscle loss and weakness. Theres other issues/symptoms but i wont go into it. The main thing is that every 3-6 months i take stock in my body and realize the decline ive made over the last 3-6 months. I understand that muscle loss is either in the nerves or from lack of use. Its not lack of use because i do all i can do every day and i wake up stiff and sore and in pain from the previous days events. Its getting more and more difficult to do normal activities. THe bodies muscles cannot support the exertion i put on it. So is it in the nerves, ive been told no by neurologist so what could it be. Im simply dumbfounded..... i eat clean diet, excercise what i can, meditate, no stress because not working, acupuncturist, chiropractic, and have tried many alternative therapies to nourish and take care of the body/mind/soul. Yet, it still seems to decline and doesnt turn around. Really makes no since, you give the body everything it needs and still the muscle is going away and im only 37 yrs old.

My new symptom over the past 3 months is shortness of breath to which the pulmonologist couldnt find anything. You think anxiety with this but im not an anxious person. THe time for anxiety was 2.5 years ago. THe mind must be at peace in order to heal.

I titled this thread a direction because if anyone has a direction or something i should look into I'm open to it because i simply have turned over all stones it seems. Why wont the body hold or build muscle. I can see and feel bones ive never been able to in my entire life. I sit in a grey area which is both good and bad. My heart goes out to all of you and thanks for letting me post here, wanted to post something and dont know where else to go
 

Tokahfang

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Jan 31, 2010
Messages
773
Diagnosis
07/2009
Country
US
State
VA
City
Richmond
Since you are just looking for shooting in the dark - what about digestion? You could be eating all the right stuff and if you aren't processing the nutrients, you could get atrophy as the body just makes hard decisions on what to eat through next. Malnutrition (in the calorie sense) also causes a host of weird symptoms, weakness, etc.
 

4jcobb

Active member
Joined
Sep 18, 2013
Messages
31
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Learn about ALS
Country
US
State
pa
City
philadelphia
I have the same symptoms as you. I been to a rheumy , nuerologist, gastro, and haemotogist. it's been only two month but I have been wasting away crazy. the doctors tell me it's all in my mind. only difference is I am anemic and I have a spike in my spep test which shows a polyclonal infection which means my immune system is active, so I advise you to have a spep test. my neurologist says I dont have Als and ruled out everything. if my nerves are fine which i disagree since my symptoms happened after a tetanus shot I am also confused.i have been also losing cartilage all over my body in this short span. my jaw has even shifted from the lost of muscle cartilage...yes a direction is very much needed.
 
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