New Neuro - Taking A Good Look
 

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?

:confused:

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.

That sounds like a LOT
 

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?

:hug::hug:'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.:eek:

This
 

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...:D And hugs to very strong people,Sue

Sometimes--
 

--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.

Finally...
 

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

Kmeb I can understand your
 

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

Thanks All
 

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... :confused:

Hopeful for you
 

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!:)

Hi Hon.

Nothing much to add. We all love you and we hope that one of your docs gets to the bottom of it.

I do hope they are giving you something to manage your pain.

Sending warm thoughts and many cyber hugs.:hug::hug::hug::hug:

More Tests
 

Thanks for good wishes - I got a surprise call today from Athena - they are coming out to do draws for some more testing (they did a few when I first got sick) the new doc ordered after reviewing my chart last weekend.... (I didnt even know she had done it!)

Also giving the weight gain a try - protein powders - even disolved in broth - apparently are very tough on the guts at first - and I tried just small amount for a couple of days - then had to stop for 2 days as the side affects were brutal - saw GI doc and we're now gonna try just tiny tiny portions - goal is to try to gain even 1/2 pound a week and they will be happy... he said if it does work its going to take a long time - but again, alternatives are worse... (my personal goal is to be able to eat a whole pizza again - but I think thats kinda pushing it:eek:)

Seems like we are all going thru some real tough times - I know much of which is not posted here on the board.... to everyone - hang in there....:hug:

Kmeb:

The day you are able to even eat a slice of pizza, we shall all go to the pizza parlor, and have one in your honor.

I'll even break my diet for that. Don't think I've had a piece of pizza in over 7 years.

So here's hoping we get good news at your end.

Slow and easy my dear.

We're routing for you.

:hug:

You can lead a doc to tests but...
 

you can't make them test you? OR while a whole slew of tests were done ages ago, even tho records are impeccably kept...there is ALWAYS one more to be done? I truly hope that THIS test is the one which gives some 'AH-HA' moments and gets you some sorts of treatments that are meaningful.

I've one sillly question tho, if it's answerable?[Not so silly really] Is the gastroparesis the result of the autonomic neuropathies? I ask because I wonder if one caused the other or was it a different medical issue completely? I ask because I, for one, want to have a clue as to what to look for in the future....I hope not, but IF I can be alert, and catch things right off the bat, I will be armed and ready with your and other folks' experiences.
Yes, it seems selfish, but we each are in our own pain worlds, aren't we?

Waiting to see what further tests reveal - :OuttaHere: - j

Mel and Dahlek
 

First, Melody, you are on! And I'll eat anything and everything on it but olives (yuk!) ok?????? yum!!!

Dahlek - Gastroparesis can have different causes just like PN - idiopathic, gasatroparesis is a very common component in diabetes (which of course actually is autonomic), nerve damage such as PN (again autonomic) post infection or surgical, even those with who had eating disorders struggle with it as their bodies just stopped processing food correctly - my onset coincided with PN - and I show other other autonomic symtoms - so we know the cause.... testing for the disesase is usually very unplesant for the most part - and there arent many drugs to treat with or treatment options - so its a tough one.... I started after PN onset by noticing my normal "iron" stomach starting to keep me up nights literally - wake up in a sweat while my dinner laid there for the night (thats what happens, food just sits in your stomach) - causes of course weight loss, constant persistent nausea and more - spare ya there - its difficult to digest fat and fiber so those are the first foods that are cut... its deftinately a challenge to treat and also difficult to find a good GI doc that is knowledeable with it.....

Whew! Long answer! :eek:

:)

Hopeful For you!
 

Hi Kmeb,

I am happy to read your new doc is already ordering some tests/labs!:)

I can feel the happiness about the doc actually showing concern/interst/initiative! Fantastic!:D

I think it helps so much to know our docs are truly interested and are highly motivated to try to help!

All of this is so difficult to deal with... when docs act indifferent, frustrated, "burnt out".. it really can have a very devastating impact upon us... or It certainly does upon me.:(

I am sorry the gastroparesis is so difficult to try to deal with. The "weight gainers" proteins can be very hard on the GI system, for sure. (I know of people without pre-exisitng GI problems actually encountering problems from some of the protein drinks.

The whole "use it or lose it" theory makes sense to me though! I wish there was something easier on your stomach to try. I am not even going to try to suggest anything, as I don't know what you have already tried and I am sure you have a tremendous amount of first hand knowledge and are making the best choice possible right now. I doubt I can suggest anything you have not already tried. (I so wish I had some super helpful information to offer to you.)

Since this last huge "attack" of my PN, I have had GI problems, but I'd thought I 've been having a GI Bug. Yet, after reading your account, I am not sure this is a GI bug. I have been eating very little, because everything is upsetting to my upper GI. When it starts to feel better and I do eat even a small meal, it feels like the meal just sits there. If I eat a small bland meal at 6 p.m., I awaken at 6 a.m., feeling like that meal is still sitting in my upper GI. It feels like "heaviness" in my upper GI. This has started shortly after the PN "attack" had become worse over this past weekend. (I had assumed a GI virus was worsening the PN, as many in my community are havin GI virus illness. Yet? I guess time will tell as to whether it is PN-related or a separate issue (A GI virus).

In fact, when I had signed on, I was going to ask about various shakes people had tired to restore vitamins. etc., that were also tolerable to a sensitive GI. I then had started reading thread before posting, as I had wanted to check in on some people I had been reading about, as well.

When you are ready to eat a pizza:pizza:, I will definitely offer to buy your favorite pizza! :D

I remain hopeful this doc will be able to help you in a very meaningful manner!:hug:

My best to you!:winky:

I don't understand...
 

The protein whey powders are predigested....no GI action or digestion is required for
the amino acids to be just absorbed. They are the easiest form of protein
to consume. In fact the Ensure is probably made from that form as well.
They are typically also lactose and casein free as well because of the way they are manufactured.

Great question...
 

Hi mrsd!:)

I am not sure if your question was directed at some of what I'd written in my post about protein powders and I certainly don't want to "hijack" anyone else's thread... incase it was directed at my statement, I also don't want to ignore your question!

You are much better informed than I am about these matters.
Your question had start me questioning the same.
For so many years, I have heard people telling me how hard protein powders are on their stomachs. I have also heard docs mentioning many people come to them with GI problems from the protein powders (especially if they use the powders frequently.)

So.. I am wondering if some of this has a great deal to do with how which forumulas they are using and how they each tolerate the formula?

I had assumed all were pre-digested, yet I just went to the cabinet to look at one of my dh's protein formuals. This is a simple whey protein formula without any herbs, etc. It says: "Predigested Whey, such as that found in peptides and hydrolyzed Whey products, results in a loss of glutamine. Therefore, (name of manufacturer) Whey is not hydrolyzed."

Might this be the explanation in some cases? Maybe some are not pre-digested? :confused:

(Additionally, I find when people use a fair amount of protein powder, the protein increase, without fiber increase, etc., causes them a great deal of constipation. Yet, one could overcome this type of a problem by making some dietary modifications. I think everyone realizes the potential for this type of a problem with increased protein intake.)

I think the current issue about protein and GI more relates to other potential issues (other than constipation with increased protein intake) with various protein powder formulations?

If so, it would make sense to use pre-digested formulas if having GI difficulties, as you have mentioned!:)

Any other thoughts from anyone?

I hope everyone is having an enjoyable day!:)

more...
 

This is not an easy subject:

http://meal-replacements.ultimatefat...-isolates.html

http://meal-replacements.ultimatefat...isolates2.html

in general whey protein is easy to assimilate. Only the purists get the most refined types (bodybuilders).

If yours has lactose then you can take a Lactaid product with it.

Normal protein found in raw foods is complex and requires significant digestion.

I am concerned that kmeb has lost some digestive capability because of atrophy. So predigested whey offers a chance to save her muscles and heart.
Personally I'd mix it into the Ensure that she already takes. Since that is what she is used to. I would not mix it with chicken broth...that has to be nasty tasting.

Great info!
 

Hi mrsd!:)

This is great info on the various forms of whey protein! I have never seen this so clearly stated before now!:) Thanks for helping to clarify!:)

Kmeb, Offering positive thoughts and prayers for success in attempting protein supplementation.:hug:

Protein Powder
 

Hi - I met with a dietician at the hospital couple week s ago - I've having a much more difficult time with the ensure (they say its the fat content) and broth is easiest thing for me to digest.... so the powders I'm trying (just one at a time though) are mostly hospital brand I have to special order... broth my stomach will tolerate but of course alone - has only 5 calories... Mrs D - I know the protein is whey protein - so thats good from what you have said (also, it doesnt taste like anything at all!) - they want me to get down one ensure a day in the am and then little shots of broth with the powder during the day - the nausea is so bad all the time that we're going for something that goes down super easy... my doc said that my small intestines are seeing the protein powder as "food" and its going to take them a long time to adust - if they do....

DeJaVu - if you do have gastroparesis (GP) and its post-viral - it will probably let up in a couple of months - so thats a positive.... have you seen a doc yet? Also, if you just google "Gastroparesis Diet" - there are a couple of good ones out there for people who can still eat mush or some types of food - they may help you out for now! (on my autonomic stuff - I also have autonomic cardiac and BP issues - are you experiencing any issues here? could be a clue for you to help your docs)

Mrs D is right - raw foods are a big fat no no!!!!! Very hard to digest!:eek: