Hyperreflexia, weakness one side of body

[jl73]

Hi,
Ok. I've noticed that I've had hyperreflexia on one side of my body much more than the other. Also weakness. Anyone else get this?
Next thing, how do you explain to people that something is wrong if you don't show obvious signs? I'm young. Still consider myself in good enough shape. I have terrible pain when lying down, getting up, stiff neck. Sometimes have difficulty walking, pain when grabbing onto things for a long time-holding a bag for instance. Bladder probs too.
I have been reluctant to get a formal diagnosis. I am afraid of setting artificial or self-imposed boundaries for myself if I get some diagnosis. Right now, most of the time I can do everything I want to, but usually with some pain, sometimes a lot of pain. A few times I am what I'd call 'disabled' where I could not function regardless of my willpower.
I had a date yesterday, and we were at a museum. I looked up at all the stairs and worried about going up them-how difficult it would be. (It was a bad day for me yesterday). My date had no such concerns. We are the same age. I have few (if any friends-socializing is an effort and many people think I'm odd or not into them--really just in pain) so I have almost no benchmark to compare myself again. (I also live alone). It does seem like I do a lot less than others. This is the first date I've been on in probably 10 years. I had to cut it short b/c I was too tired. Also, it got really cold. Somehow this coldness sapped my strength. It always does. I have no explanation. I still manage.
PLS was hinted at by doctors. They just said nerve damage.
My third question is then, is it better to just live without a diagnosis even with symptoms? untill they get bad enough to impact life every day? I've ruled out many of the treatable problems.
One last thing, I do understand how bad things can become and am grateful my symptoms are mostly annoying and painful, not life threatening.

 

[Alyoop]

You are in a similar situation as me in regards to diagnosis. Pls suggested as the most obvious diagnosed. I think that if all treatable options have been put aside, then just living day to day dealing with symptoms is OK. My Dr wants to do 2x yearly EMG, but I would rather not. What it may or not be, will make no difference to my future, but living each day as best I can,will.

Aly

 

[johnnyliverpool]

hi 73..well blimey..your symptoms are upper motor neuron..poss pls.......same as mine, even the neck prob...you appear young for this...umneuron syndrome is common with those with brain or spine probs....whats causes them is difficult to find.......i. e. could be your neck prob..or your neck prob coulld be caused by it!...look up the upper motor neuron syndrome on the web....its not the end of the world babes.....loves johnnyliverpool.

 

[Pat Paine]

Hi 73,
You need to see a neurologist and get an EMG and nerve stimulation tests. Insist on these.
It is better in every way to get a firm diagnosed,early intervention is better,you qualify for research easier,
and disabilty benefits , if needed, require diagnosed, so does your peace of mind .
blessings, Pat

 

[olly]

hi jl73.
in response to your origional question.............my right side of the body is more prone to myoclonus and my left side is more sluggish and slower probably because it has more clinical weakness.

a diagnosed is important for peice of mind also for any help you may need.
on page 2 theres a thread "spf newsletter", if you look at the latest one on page 2 of that thread you will find an article with a list of neuro's who have pls patients.
there maybe a neuro near you,as pls is so rare it helps to see a neuro who already has a patient.