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

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!

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)

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

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

Do you have specific genetic testing results (deletions, corss-hatchings) that have recently come up and led to this idea?

It's certainly plausible with your situation--there are likely a lot of undiscovered point mutations out there that cause neurological symptoms, and we're going to find more of them as the human genome is unravelled--but I'm always curious as tohow these determinations are arrived at.

(I, for one, never thought you had amyloid in the classic sense--there were too many ambiguous results, and bluntly, if you'd had it this long, you probably wouldn't still be around to post, so I'm glad there's some agreement on that.)

if I can answer some questions...

First - Billye - I'm not giving up! And yes, my emergency info with the cats vet, "Foster Mom" etc have been on the fridge door for years! I carry my meds, and doc names with me all the time in planner and wallet.... (oh, I have PN on one side of fam that hit early but never got super severe - but my genetic background is also very common for genetic type mutations)

I just heard from the nutrionalist at the hospital - got to meet with her in next couple weeks since I'm not gaining weight - so thats next on the agenda..... Mrs D - thanks for that link - I will contact her....

Joe - I think I kind knew that I wasnt gonna get relief from this - especially the decline I've seen the past year or so... its a good thing to know what one is dealing with...

Dahlek - doing the PT - its actually helping my back some... just sleep for the next two days! so I the nutrition issue is part of this.....

SS - you know Bax needs me!!!!!! I promise to be here for him - I have to turn on the puter so he can send you e's!

Glenn - they had to do clinical diagnosis by ruling rest out and closely studying sural nerve etc.... and progression of disease - actaully I have two top neruos that are agreeing on this now... there is no test yet though - they are working on one... on amyloid - they still wont rule out cause it can present as other conditions first and go on for years - but at this point the doc left up to me to do another biopsy right now - I said no - we'll see what happens.... genetic just makes sense.....

Anyway, time will tell.....

as you discover more about what is and is not behind your experience with various types of neuroapthies, ans as you discover just what (and how much) is and is not helpful to you as an individual.

I have not been around much for awhile, due to the severity of illness; however, I have followed your story/experiences while checking in and reading.

You have been dealing with very "tough stuff" for a long time now!

It seems, if one is rather severely affected and can find something that is potentially helpful...there is such a "fine line" between how much of this "something" (even PT) is helpful and how much actually further aggravates one's situation. The "balance" is so delicate... and sometimes the location of that "fine line" also changes.

Dealing with this... as you know all too well... is a major challenge... every single day. I applaud all you have done to try to find the closest approximation of the best medical explanation available to yourself and to your various doctors... over so many years. This is a huge accomplishment.

I deeply applaud your openess, your continued courage and fortitude. I also applaud your ability to "ease up" on some activities that may not be as helpful at a greater intensity level as they might be at a lesser level of intensity (PT, for example). (This can be a tough "realization" to accept and to actually implement, even when doing so may be truly in our own best interest.)

I am grateful for all you share.

You (and so many others here) remain in my prayers and meditations.

Truly hoping you can experience an increasing amount of deep inner peace in your life. And... I hope you also experience times of great joy, too!

I'm sorry that there was no news that could lead to treatment, but I can see some relief in no longer having to pursue a diagnosis, and having doctors you believe in, who tell it like it is.

You're surely a fighter, no one would ever, ever doubt that; you've had more stamina through this than I can imagine ever mustering for myself. And being alone with this is the hardest.

I do hope the team you are with is able to make arrangements for you to have whatever companionship and nursing care you need. I didn't like reading that they were telling you to "make plans". Can't they make the plans?

Also, I'm hoping you are able to get TPN. I know you've always resisted the idea, learning from the gastro community of all sorts of complications, but it could help your strength, and doens't have to be forever, unless you feel so much better you want it indefinitely.

Kmeb, you are an amazement.