[BEGLET]

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?

[cyclelops]

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.

[dahlek]

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

[Brian]

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

[HeyJoe]

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.

[shiney sue]

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

[Aussie99]

Originally Posted by kmeb

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?

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

[dahlek]

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

[BEGLET]

So much going on - it is overwhelming - and I dont expect anyone to be able to "cure" anything - just help the back pain, if they can find the reason for the PN great, if the IVIG is not needed (and is on hold now and this doc wont give again until she shes evidence of need - fine), if is is inherited then I will know what to expect as the progression has continued and paraneoplastic - well, we'll see.

As for J-tube - most people with gastroparesis dont get to go "back" - the goal is to keep that gut working (stomach) and the tube bypasses that and the less its used, "you loose it" an option they look at very seriously at all for someone like me - and they will try anything before putting in one cause the nerve damage isnt going to reverse (at least with our current medical knowledge and the fact I've already had it for six years with decline, not improvement) - also dealing with the serious infections and a pump of "formula" to lug around combined with constant trips to docs and hospitals is something they also consider, cause again, its usually a no turning back usually in this type of case......

Again, we'll see..... we'll have to see what the docs say...

[DejaVu]

Hi kmeb,

I was just reading and was touched by how much you have been through. I, too, hope this doc will take a thorough look at everything for you and will help you to take excellent care of you!

It has to be tough to have been through so much.

I so hope this one will help in the best way possible!
I wish all doctors realized how much their attitudes and thier commitment to truly helping actually helps those trying to cope with chronic and painful conditions.

Looking forward to things starting to "look up" for you, although I know this will take time and perserverance!

I hope an abundance of blessings come your way!