[BEGLET]

Well, after 9 years of progressive PN with complicating autonomic symptoms (gastroparesis, no solid food in 8 years) and heart issues - and different diagnosis - think I've finally gotten thru the mill of tests - treatments - and have found docs who have really looked at symtoms, biopsies, test results, etc. and feel they have found culprit....

ALthough I've had positive and negative amyloid biopsies in the past - just saw a cardiologist that treats amyloid patients.... wore a monitor for 21 days that shows I'm having frequent cardiac "events" that I'm not even aware of - some benign - some not so much - but I'm going to continue on my current heart meds unless a big change - then we may have to change meds and go for the biopsy..... (lots of events with SVT over 150 that I'm completely unaware of)... not so worried about possibe amyloid as he is the PN.....

Nuero reviewed sural nerve biopsy from years ago, other tests - fact that I was on high dose IVIG every week for a year and a half but end result is I'm getting weaker, ran a CMT panel, that was ok - but feels its definately a form of an inherited PN that is progressive - and affecting all systems - severe sensory, autonomic, and not yet as severe motor PN (theres no genetic test for this yet).. and that I need to make plans (which I am) to have people around to help me.... doing PT but so far just causes severe exhuastion - but hoping it will help build some strenth in the long run......

Also is whats causing my gut issues and not being able to eat - we'll see what happens there.....

So thats the scoop..... and I feel confident in these docs... and I'm not giving up..... but maybe I'll take it a bit easier on my body and stop trying to push so hard!

[Silverlady]

Originally Posted by kmeb

Well, after 9 years of progressive PN with complicating autonomic symptoms (gastroparesis, no solid food in 8 years) and heart issues - and different diagnosis - think I've finally gotten thru the mill of tests - treatments - and have found docs who have really looked at symtoms, biopsies, test results, etc. and feel they have found culprit....

ALthough I've had positive and negative amyloid biopsies in the past - just saw a cardiologist that treats amyloid patients.... wore a monitor for 21 days that shows I'm having frequent cardiac "events" that I'm not even aware of - some benign - some not so much - but I'm going to continue on my current heart meds unless a big change - then we may have to change meds and go for the biopsy..... (lots of events with SVT over 150 that I'm completely unaware of)... not so worried about possibe amyloid as he is the PN.....

Nuero reviewed sural nerve biopsy from years ago, other tests - fact that I was on high dose IVIG every week for a year and a half but end result is I'm getting weaker, ran a CMT panel, that was ok - but feels its definately a form of an inherited PN that is progressive - and affecting all systems - severe sensory, autonomic, and not yet as severe motor PN (theres no genetic test for this yet).. and that I need to make plans (which I am) to have people around to help me.... doing PT but so far just causes severe exhuastion - but hoping it will help build some strenth in the long run......

Also is whats causing my gut issues and not being able to eat - we'll see what happens there.....

So thats the scoop..... and I feel confident in these docs... and I'm not giving up..... but maybe I'll take it a bit easier on my body and stop trying to push so hard!

Finally...a diagnosis....I just wish it were better news. Do they have any idea where it is inherited from? I know your father and your brother don't seem to be affected (if I remember correctly). Could it have been your mother's side of the family?

I hope the PT helps. It's always hard no matter what kind of shape you are in. After all, it's trying to heal parts that are out of whack. And you have been bad out of whack for a long time.

Don't give up. Giving up is for people who can't fight any more. Please make an emergency list of your doctors and medicines and post it on your refrigerator. Also a name and phone no. of someone who can care for your cat. I've done this for myself and my pups. My husband can't keep up with the medicines and doses.

Wish there was more I could do.
Billye

[mrsD]

is not more optimistic.

I do hope some solution is found soon for your nutritional needs. It appears that the stomach needs some priority.
Even if you have to go TPN for a while to see if that helps, I would consider that.

A new member came on the introductions thread.
http://neurotalk.psychcentral.com/sh...696#post288696
I invited her here, but don't know if she came or not.
Her experience with gastroparesis, may illuminate things for you.

Hang in there!

[echoes long ago]

Its not a diagnosis that you would want, but you now know what and why it is happening to you and what you are up against. Over the years you have been a very impressive person to me and you are a very strong person and you do all you can do which is your best. If easing off some on your body in pt and at home is what you need to do then that is what you should do. Im awkward with words in print at times but what i mean is that knowing why things have happened is a sort of relief for us mentally over time. Hang in there. Joe ( formerly Hey Joe)

[dahlek]

Not the kind of news one wants to hear?
But at least it's sounding as if your docs are trying to zero in on causes and issues fairly clearly.

Who says neuropathy doesn't/can't become serious? It can, and in your case it appears to be. I for one, have acquired a very healthy respect for MY OWN NEUROPATHY!

Let's all hope and pray that it really isn't as bad as it seems? Patience is the art of hoping....

Hugs 's - j

[shiney sue]

am beginning to feel nothing is what we want to hear ,but nothing is as bad a as it could be,you are a figter,your strong,as is Baxter.You are in our hearts,sometimes we look so hard to find out why,we go crazy. So far your not ,I will bet you never will be..Oh also my Mama aften mentioned friends are nicer to have then family.. You all decide,I made up my mind along time ago hugs to all you are all wonderful Sue