Old 03-12-2018, 05:43 PM #1 (permalink)
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Default 37 y.o. - Long term symptoms, muscle loss recently - please help

Hi all,
I'm a 37 old male finally posting here because I've become very anxious recently. I did read quite a few posts and I understand time is an precious asset, so I really appreciate if you can share your point of view. My symptoms from the most recent, most worrisome to the oldest (I know these might be connected or not).

1. A lot of muscle loss in the last three months (it's become more visible since December, but I started noticing it as far as one or two years ago). I notice it everywhere now especially along the collarbone/shoulders blades, arms, chest, hands (thumbs in particular), knees, feet (big toe in particular), ankles. Beside this I've also seen on two occasions small dimples (<1cm) on my skin (one was near the left elbow and the other, a couple of days ago at the base of my right index finger). Both disappeared in a couple of hours after I noticed them.
2. A constant pressure-like/numbness in my upper right arm, next to the bicep, for 6 months now.
3. Muscle fasciculations especially in my calves, but now they occur mostly everywhere - especially after doing some effort. These have started around 2 years ago, too.
4. Itchy and needle pinches sensations all over the body after brisk walks (when I'm rushing to get somewhere or just doing a little more effort than usual).
5. Icy-cold sensation on top of my head. At some point it disappeared but a few weeks ago I felt it again. Icy hands/feet/body in general. This has also become worse in the last couple of years. I am wearing 3-4 layers of clothing (inside).
6. Numbness - in my arms, more at night in the bed. I woke up sometimes without felling my right or left arm and just started to shake them to feel them again. But also in my legs, hand joint or fingers.
7. Muscle stiffness - sometimes in my calves, sometimes in my feet or shoulders.
8. Joint cracking - I had these for a long time too, only in the last couple of years have become very common in all joints of the body.
9. Urinary incontinence (this started a long time ago, probably around 2010 or even earlier). I've been to several urologists but no clear cause has been determined - one of them said it could be muscle related.
10. Difficulty speaking - this was also for a long time happening, when I try to speak very fast and communicate a lot of things. My tongue just stumbles and I cannot articulate any words anymore if I don't stop to take a break.
11. Tinnitus - I perceive it in my head (I know it's very common, I also went on to investigate the cause with several doctors without success, audiogram was fine).

I've addressed my concerns to my GP and I did went to see two neurologists one year ago. They've tested my motor skills and said it's not ALS. I did a brain RMI which appeared to be fine to the neurologist and also did an EMG testing my lower legs (because of the fasciculations) and forearms (because of the numbness). The result was negative, too.

This has comforted me for the last year but now I became really concerned about the muscle loss and the shortness of breath. One more detail - my father also has trouble with muscle numbness and cold feet and hands (but does not have a diagnostic as far as I know).
I am temporary living with my partner in another country, but I will go back in Romania in two weeks and try to get another appointment with my GP because I need to find out what this is, and I am very concerned.

Thank you so much for taking the time to read this. And good wishes for everybody affected by ALS.
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Old 03-12-2018, 08:10 PM #2 (permalink)
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Default Re: 37 y.o. - Long term symptoms, muscle loss recently - please help

Greenjay, there are a lot of conditions affecting nerve and muscles besides ALS. You describe sensory symptoms such as numbness, burning, tinnitus pins and needles, pressure sensation, urinary issues. ALS is a disease of motor neurons. None of the sensory symptoms you described would be consistent with ALS. Muscle loss in the absence of muscle function failure also doesnít suggest ALS. So you have something else going on, but not ALS. Work with your doctors, but donít lose sleep worrying about ALS.
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Old 03-13-2018, 05:23 AM #3 (permalink)
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Default Re: 37 y.o. - Long term symptoms, muscle loss recently - please help

Thank you for your reply and reassurance, Karen! I will check with my doctor and see what's happening. Best wishes to you!
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