Old 09-18-2012, 06:16 PM #1 (permalink)
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Default weakness/ muscle loss - direction

Hello All and thank you for reading my post. First off id like to first state that ive read many posts and all the stickies. My reason for posting is to see if anyone has any thoughts on what direction i should head in because ive run out of options.

History- lyme disease diagnosed 8 years ago but ive had it for 15 years + I was doing ok for a decade and then the last 10 months has been a decline. I have many neuro symtoms (tingling, fog, dysfunction) but ill just focus on whats happened recently and led me here. 10 months ago i was trying to use a drill and noticed it weighed a ton. Went to neurologist with symtoms of perceived weakness. EMG/NCV normal, blood tests normal, neurological examination determined nothing wrong neurologicaly. Neuro said its anxiety (yeah right) I did take note at what he was doing and the fact he said you cant have anything major becaus eyou have too much meat on your hands( no wasting). Over the next few months i developed a clicking when swallowing and neck pain. Visited a Als/MND specialist at UCI and explained weakness, muscle loss, clicking, neck pain. He found nothing wrong and said i looked strong as an ox. Suggested i visit a psychologist. This seems to be a theme when they have no answers. Few months later had a muscle biopsy which came back negative.

Based on my test results and neurologists examinations i do not fit the profile for any sort of MND. I respect the drs opinions and they know better than i. Its been five more months now and im having more problems. Every few months i take stock in my body and how it looks and feels. I notice tissue loss in feet/toes area and hands. More of a tendon look yet im not losing weight. Im probably losing muscle in all areas of the body although i cant tell because of fat covering those regions although hands and feet i can tell. My body is also adapting to changes. With weakened toes i lift my feet up quicker than i normally would since i cant really push off on them anymore. Again, this would be perceived weakness not true weakness.

I continue to battle daily trying to move around and do as much physically as possible but im developing pain in areas such as hips feet and lower back. I wonder if this is because of weakned muscles. If i self diagnose id say im slowly losing muscle and strength in a uniform manner but after 10 months im unable to stop it. There is no doubt somehting neurologicaly is going on because muscle loss can only be attributed to non use or neuropathic and mine is not lack of use.

Im in this grey area of no answers with regard to neurolically what is going on and why im losing muscle and getting weaker slowly. Im doing all i can battling the lyme front but im failing to stop the degenerative nature. The lyme docs dont really have an answer for it, they just want to chelate, antibiotic, and eat healthy which im doing.

Ill be heading back again to the regular nuero at some point but i know what the answer will be already. Ill pass the examination and without some sort of clinical proof according to them im perfectly healthy.

Anyone have any thoughts on a direction to head in ? i may just be grabbing at straws here. and thank you


My heart goes out to all of you dealing with illness. Its such a tough and horrible thing. We all get up everyday and fight because thats all we can do and try to enjoy each day.
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Old 09-18-2012, 07:25 PM #2 (permalink)
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Default Re: weakness/ muscle loss - direction

I will too return to my regular neuro next week and explain my 'unexplained' symptoms to him based on tests and neuro exams. And he will tell me I am fine also again , which is a relief, but I know I am not. And I will be told to see a psychologist (as I am currently doing). I won't get into my situation, it has been given here before. I sometimes think there are not answers which is discouraging and frightening. I can only give you my empathy.
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Old 09-24-2012, 03:29 AM #3 (permalink)
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Default Re: weakness/ muscle loss - direction

Nothing sounds like ALS with your test results. ALS thatnhadncaused atrophy would def. show up on an EMG. Really, it would.

Have you seen a rheumy to check I to auto-immune ssues? Even fibromyalgia, which can cause the body wide stuff you describe. It can be truly horrible, and it effects both men and women.

If there was atrophy in your hands, a doctor wouldn't miss it. I weighed over 200 when my hand issues started, and the doctor found the atrophy in my hand that I hadn't seen. Within a short few months, it had progressed to where anyone could notice it.

Good luck finding answers.
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