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Undiagnosed symptoms for almost 10 years, any advice?

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Old 02-18-2018, 03:09 AM   #1
Matt21
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Confused Undiagnosed symptoms for almost 10 years, any advice?

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.
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Old 04-18-2018, 06:51 AM   #2
Nozyspy
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Hi there, have you ever looked into a connective tissue disorder such as Hypermobility syndrome/Ehlers Danlos?

You mentioned Syrinx, fibro, fatigue, neck pain, limb weakness and muscle pain, which are things that can be associated with connective tissue disorders. Also bloodwork and tests often come back fine with such things.

I have hEDS myself and have recently been looking into whether i have some neck instability where part of my spine could be pressing on my brain stem and causing some odd neurological symptoms.

When i saw your list it piqued my interest because i have seen other people with EDS mention similar things and i wanted to post just in case it was something that might be worth looking in to if your symptoms are unexplained.

I hope you find some answers!
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