Just saw a new neuro today - even an hour consult and she was overwhemled with all the health issues I have - but is the first doc since I had it done six years ago who carefully read my sural nerve biopsy (that doc told me told move into nursing home at 43 - I said "bye").... she just kept repeating "this is bad" while reading the biospy results, and asked for me to come back in a month after her vacation and also I send her specfic tests shes has asked for... I've had several diagnosis in the past - Post Viral PolyNueropathy with Chrnonic Fatique - Amyloidosis (positive and nagative biopsies so they contintinue to bioppy for it whenever doing an invasive procedure) -HSANII (heriditary) and CIPD... she wants to see auto-immune markers which have not been there... therefore tired and sore but at least someone who thinks I have not have a real good look at my entire history and is going to do this....

Anyway, looks like she might make an effort - in the mean time I'm desparately trying to beat the gastroparesis - which is getting worse and I'm dissapearing - they have put me on mostly broth and protein powder and hoping that will add some weight and avoid J-tube.... (which my GI doc does not want to do).... and going to get back shots for pain there - pain doc is real nervous because of previous drug reactions but gotta try it - and next week they are looking at bladder-kidney issues!

Other then that -just fine But I'm fighting ..... and have to just learn to rest more between all these....

Thats the scoop - maybe I an get to the bottom of a mystery here?

Hopefully, you have a doc who is a sleuth. I like those with inquiring minds....not the know it alls...sounds like this one may be a winner.

In the meantime, you get to put on weight!!! That is important.

of problems and a lot of docs!

Hopefully you have found a neuro who is curious. One who might actually try to do things that can help?

's - j

I am glad you have someone that is very willing to help you and really hoping to read some positive outcomes in the future for you.
good luck
Brian

Its good to hear that you have found a neurologist who is taking an interest in you and will look to get to the bottom of things, especially after the way you were treated by the last one and im sure ones before that. Of course this is bad, this is bad probably wasnt the highlight of the visit for you.

is good news,just rest in between..Now don't you just hate it when
they want to put you in a place at 42,where they know everyone
over the age of 90 can beat you at shuffelboard.. That's sounds
unhealthy to me..I mean if you fall it should be where no one can
see you wear boxers under your mumu,or moo moo,whatever
more power to you sister... And hugs to very strong people,Sue

--with all of the ambiguous testing/diagnoses many of us (certainly you fall into this category) have had over the years, it takes a new, inquiring person to almost "start from scratch" with fresh eyes and mind, and start working on where one is now.

I hope this doc continues to "work" on you and maintains that curiosity even if the initial testing results are still ambiguous or equivocal.

Well it's about time!!! I'm so glad someone is taking a fresh look at all of this. And good luck with the back pain shots. Sure hope some of this helps you.

Billye

Hi Karen,

I really hope you do get to the bottom of the mystery.I agree with Glen that it is often a new doctor with fresh approaches that can sometimes bring more to the table. I like my GP because every time I see him he approaches every complaint I have like a new issue and doesn't try to blanket it as part of my PN. As we all know one can have PN and other unrelated things going on. I understand why the GI doesn't want to consider the J tube due to the risks with infection and the sort.

I have recently had my first experience with the J tube as we used it for my uncle who was essentially refusing food. He was loosing weight something chronic and getting weak. He was taken to hospital and had the tube put it, and gained both weight and strength over weeks. He is better now and eating again, but can't eat bulky things and basically has to eat puree's and baby food but he is healthier now.

I also have gotten a number of diagnosis before they came up with my "monophasic autoimmune" diagnosis. I had been retested for most other illnesses on a number of occasions with all testing coming back negative. I am waiting for my skin biopsy now, hopefully I will get it this year when the lab is up and running.

All the best,
Aussie

reluctance about Jtubes? They CAN be useful but at the same time your body is OPEN to possible infections that NONE of us ever want to see. I guess it should be considered a trade off between long and short term possible benefits? AND as a temporary short-term solution.
Only YOU can decide what to do. Weighing the risks and advantages. We each have to go thru these decisions every step of the way IF/WHEN we are diagnosed and how we are treated.... Finding the wise 'input' and deciding the 'output' so to speak can be an art?

Good thoughts and all that - j