Hello Everyone,

I'm a 39 yr old man who has been experiencing ongoing neurological/muscle issues for the last 10 years. I will summarize the progression below and if anyone has some suggestions or can relate from personal experience, I would love to hear from you.

- I noticed a difference when biking, it simply became more difficult to do the same path as I had always taken to go to university. - 2007
- At the same time, I noticed that i would always wake up fatigued with quads and thighs feeling as if i had ran the day before (which i hadn't) - 2007
- I saw a few doctors who didn't notice anything wrong, one suggested CFS and to wait it out (still waiting by the way)
- I decided to go to the gym to get in shape. After my first workout, all my back muscles became so stiff that i had all sorts of back pain for about 2 months - 2010
- Over time, i became more easily tired. Walking up stairs i get out of breath.
- Whenever i flex my muscles, they shake like crazy. I get all sorts of tremors when squatting, trying a plank, flexing biceps. noticed that in 2010/2011
- Developed intense twitching body wide that is exacerbated by anxiety. Also noticed a muscle rippling effect under my skin when doing a squat, shoulder lifts, etc. - 2012
- The weakness seems always proximal but stiffness develops after i use my hands or feet for an extended period of time. For example, after cleaning wheels of a car, my fingers are stiff like metal wires. After playing some soccer, my feet feel the same - notice in 2012/2013
- Feeling of heaviness spread to shoulders - 2013 but then subsided in that same year. It now came back accompanied with neck stiffness in the throat/tongue area - 2017
- Through out all of this, my sleep has been rather unrefreshing and i always have a feeling of fatigue.
- Constant tongue fasciculations (2011-today)
- Progressive exercise intolerance (2008-today). I can still go skiing or play volleyball but i will get cramps and be totally wiped the next day.
- I have a numb spot in the middle of my back and above my knee where i cannot feel any pain or temperature.

One way to describe how i feel is similar to the stress/anxiety that someone experiences before a speech. When your muscles are tense, your legs/arms feel flabby/shaky. However, i feel like that all the time.

A bit about the tests/ medical appointments:
- CFS suggested in 2008
- MRI in 2009 revealed a small syrinx between c2-c3 (9mm long and 1.5mm in diameter) - neuro says it is asymptomatic and i always had it
- Rheumatology: diagnosed fibromyalgia but neuro dismissed it
- Muscular Neuro: did EMG/NCV in 2011 / 2013 / 2014. Did not notice anything abnormal. Only some fasciculations, normal recruitment, elevated activity upon insertion of the needle. I was told it was not ALS, which i was terrified about
- Biochem Neuro: did extensive bloodwork and did not notice anything that would suggest a metabolic neuromuscular issue
- Saw chronic lyme disease doctor. Put me on antibiotics for 3 months without any significant results. My igeneX test (western blot) was inconclusive although i have been travelling a lot to different areas of the world.

That's my story, i left out details believe it or not. It's been a long journey. If you have read this far and have some suggestions or related to what i am going through, please let me know. This is obviously taking a toll on my family and I. Thank you for reading.