Home Login/Join My Space Help Members Forums Search Today's Active Topics New Since Last Visit
Kennedys Disease Association Homepage    Kennedys Disease Community    Forums  Hop To Forum Categories  General Discussion  Hop To Forums  Open Topic    any advice would be greatly appreciated

Moderators: Bruce, SusanneW
any advice would be greatly appreciated
Registered: 12-29-2013
Posts: 9
posted   Reply With QuoteReport This Post  
Hey guys,
M names Trent, new to the forum, was hoping to get some insight and advice. I have reached my twelve months of troubling symptoms and thought i would share them with you to see if anyone has a opinion. The symptoms came on over 2 days, the first day 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 that lead into these 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. 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)
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 and 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 (still current)
9. extreme clicking of joints with pain involved(still current)

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
2. 5 emgs in the one year, first emg was suggestive of mild chronic denervation, the other 4 were completely normal and clean
3. endocronologist, blood work and hormones all fine
4. mri of the brain was clear
5. spinal tap discovered cranial hypertension was raised.

note: Last neuro visit was 3 months ago and i got another all clear of anything sinister or nasty.

The things really worrying me are finger twitches that move my whole finger, they are very persistent and happen daily and a lot, does anyone have these that frequent?
the tremors are really bad and my whole body shakes especially my mid section which feels weaker and shakes like crazy just trying to sit up in bed unassisted, or my legs if i just hold them out right will shake and tremor violently and visibly anyone here get that? also the cramp like pains that are very painful and pain in general in muscles unexplained and the tightness/stiffness anyone get that? one last thing i have a lot of rib pain, they are sore just to tough, hurt when i cough or sneeze or breath in a lot coupled with extreme shoulder pain....could this be BFS? could it be fibromyalgia? i am male tho. Judging by my medical history can i rule out ALS? even tho i have never had my back, tongue or chest, stomach emg'd, only every limb? i am only 28 years old, any advice and support would be greatly appreciated. I have had gynocomastia at age 16 and it has developed again.

My ckp has been normal everytime tested and the emgs are usually clear except the first one whom other neuros say the test was botched, would a low ckp and clear emg rule out kennedys? i have no family history of anyone have kennedys disease.

thoughts would be greatly appreaciated.

Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
Trent, thanks for contacting the KDA. Symptoms coming on over two days does not seem KD related. Kennedy's Disease is an adult, slow-onset condition that usually starts with minor symptoms. The two day factor baffles me.

There is a simple DNA blood test that will either confirm or through out a diagnosis of KD. Information on the blood test can be found at: DNA Test . Your doctor can draw the blood and send it to a DNA lab. Test results usually take 3-6 weeks.
  Powered by Social Strata  

Kennedys Disease Association Homepage    Kennedys Disease Community    Forums  Hop To Forum Categories  General Discussion  Hop To Forums  Open Topic    any advice would be greatly appreciated

Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614
Tel: 1-855-532-7762
Email: info@kennedysdisease.org