Hi,

I have had a nerve conductivity test and they think I've got Kennedys. I have looked online and I have EVERY symptom pretty much. Due to Covid lockdown I won't see a neurologist until end August!


I have been going to the GP for more than 10yrs asking about each new symptom and been misdiagnosed/fobbed off. They put me under an Old person specialist even though I was 53 and I saw him once a year. He decided I had Essential Tremor. Each year I saw him I felt like I had one chance to investigate one of my multiple issues. This year I pushed my right leg not working and that led to the nerve tests.

RANT:
I find it amazing that I have been told about the results in the PS of a letter sent between this specialist and my GP which they knew I'd read. An appointment card for August then came but that is all I have had! I am left with no advice, any way of asking questions, no-where to turn. Trapped in a house with my wife who I don't want to over-burden. Can't even go out.


Because Kennedy's is heredity I have not told my wider family as they may then worry if they are carriers or next potential victims. There are no male relations alive to ask if they have symptoms. No sufferers to my knowledge.

I have...
Internal shaking - stomach, bowel, sometimes neck or head
I cramp up when I make even simple movements
My throat half closes over like a cramp. I can still breathe and I can then relax and it passes
Recently a fat tongue - talking takes some care
My right leg flops as I walk - varies day to day
Toes bend and numb - some pain usually at night
I have become very doddery on my feet
Can't carry a cup - hard to type on a smartfone - my arms are like they are angry
My mouth droops on one side for a bit like the stroke effect - and then recovers
My neck is weak and I get terrible headaches - pain
I lost legs muscle about 9yrs ago - I lost arms muscle about 4yrs ago
One of my man areas has reduced in size
I'm overweight but when I did lose weight previously the moobs never went away.
I choke on food if I'm not careful
I am always clearing my throat
My eyes shake sometimes
I feel a flushing on my skin

Probably other things too.
Now I am looking at an actual condition, alot of other things now make sense (like moobs),

I know I need to recalibrate my brain with all this.
I know my life will be changing dramatically. And the long term doesn't bear thinking about.
I've read I need to value what I have - and not the above list.

I guess I am looking for a place I can talk about it without burdening family.

Best wishes to you all.

R