View Single Post
Old 12-11-2013, 05:37 PM
Mr & Mrs Peyo Mr & Mrs Peyo is offline
Newly Joined
 
Join Date: Dec 2013
Posts: 1
10 yr Member
Mr & Mrs Peyo Mr & Mrs Peyo is offline
Newly Joined
 
Join Date: Dec 2013
Posts: 1
10 yr Member
Default

Quote:
Originally Posted by Riverwatcher View Post
Hello all

New member here, appreciate all of the help and insights from members of this forum, thank you very much.

After seeing 3 neurologists and 1 rheumatologist, given copious amounts of blood and 2 EMG's, I've been diagnosed with moderate to severe idiopathic PN. It has progressed aggressively and I'm seeing strength loss in the muscles in my ankles, feet, lower legs, hands and forearms. I've been physically active all my life, (current age 56) get to the gym regularly for moderate weight training and stretch daily. I have experienced chronic muscle and joint aches and pains which are alleviated by stretching and working out. I've recently noticed that my lower right leg muscles are noticeably smaller in size than my left leg.

My understanding is that strength loss can one with PN, the question that I have is what if anything can be done to offset this, or slow the progression?

I enjoy about 2 to 3 ounces of scotch daily and it has been suggested by one neurologist that I give this up and to also begin a gluten free diet. I've tried this for awhile without seeing immediate payback - just wondering if anyone else has similar situation and has seen positive results from any actions taken.

thanks much!
River
Hi River- I suggest a simple blood test for familial amyloidosis. My husband had similar symptoms, and found out this is what he had. It is extremely under diagnosed, because it has so many symptoms that can be attributed to other diseases. He was tested for everything from lyme disease to ALS. After some detailed family history information an extremely bright neurologist suggested he had TTR-FAP. Good luck I hope you find comfort.
Mr & Mrs Peyo is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
hopeful (12-11-2013), mrsD (12-11-2013), v5118lKftfk (06-02-2014)