Symptoms, please offer advise???

Tb12

Here is my original post on this board..

I posted in a general forum but thought I would post in here..

Hey guys
First time on here for me, I am a 30 year old male from Melbourne Australia...

My symptoms have been ongoing for almost four-5 years now with no diagnosis what so ever and are not stopping only getting worse.. Symptoms are as follows ..

Started with waking up with super tight feet I had to stretch, it then went to a shoulder as well each morning I would have to move shoulder and stretch feet, throughout the day they were fine unless I relaxed for long periods and they would become stiff again and sore..

I then noticed at the gym one side of my body felt cold and numb like it was getting no blood no pump to it..



Besides that I had some general fatigue, the odd muscle twitch here and there this is how it all started..

Then one day I felt numb in one side of my face and I felt pins and needles or pin pricks like feeling in one of my shins.. Then all of a sudden over 2 days i did some gardening and noticed my right hand tremoring and very weak so i stopped, the next day i played basketball and that night all hell broke lose on my body and i woke with twitches all over and jerks that lead into these symptoms..

symptoms:
1. high quantity of twitches everywhere in my body, you name it, i have twitched (still current)
2. postural tremors felt and seen as well as tremors if holding weight etc on any limb, body part (still current)
3. Proximal muscle pain and feeling of weakness
3. myclonic sleep jerks and now some electric shock type jerks whilst awake that move my body and a limb (still current)
4. GERD, heartburn, scalloped tongue, slurring of some words my th's sometimes turn to f's, tongue biting on occasion whilst eating (still current)..food getting stuck in throat and needing a extra swallow
5. extreme muscle stiffness throughout whole body, feels difficult to hold my posture most days (still current)
6. extreme muscle pain that is sporadic and all over body periodically like sharp pains or deep pain (still current)
7. tingles, burning, ticklish itchiness that drives my crazy through out my whole body (still current)
8. a few cramps that kill or a feeling of a cramp like deep pain through out body parts, like pinching, like someone pinching me (still current)
9. extreme clicking of joints with pain involved, some ache without use and other days always in pain under stress (still current)
10. Got some issues downstairs like irritation and some impotence in dribbling urine .. not full blown impotence, can't get erection standing up anymore just laying down..
11. Eye floaters and had some brain fog where I didn't know a limb belonged to me that was blocking the TV vision it happen to my leg it was very weird and I am Mis reading words


I have lumbar stenosis, degenerative discs, bulging discs in lower back and some thoraciic.


medical history for these symptoms
1. 8 neuro visits:
2. clinical exams always fine and passed, no clinical weakness seen even tho i feel weak and am tremoring and less stable
3. 5 emgs over 2 years, first emg was suggestive of mild chronic denervation, the other 4 were completely normal and clean
4. Dismissed by rheumatologist, said I was clean
5. All endocrine issues are fine besides a low vitamin d
6. Brain MRI is fine
7. Slightly elevated spinal fluid diagnosed with intracranial hypertension but currently not getting treated for it as neuro said let's just monitor it and pseudopapildemia in my eyes
8. Break out of red blot dots all over my body like petechia I think they are called
9. Had a feeling of fluid in my head since I was little and it makes my dizzy and I can hear my heart beat in my ear when I get up or a swooshing sound and I'm dizzy


I have consistently bought up my concerns of kennedys disease due to symptoms and the fact I have gynecomastia, but due to my CPK blood work being normal and no familiar history along with clean clinical and emg neuros won't test me for it ...not even for piece of mind..

I am usually bed ridden and I'm over it, it's so difficult to even to on or plan a future being this sick and not knowing what's going on with me at all..

Finally got a neuro genetics dr to send me for kennedys test.