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#355850 - 09/09/09 09:28 PM Re: Amyloidosis [Re: taberge]
Megan Offline

Registered: 04/11/02
Posts: 3607
Loc: Canada
Yep, I hear ya. Do you have experience with it? I was just wondering if anyone here has an actual diagnosis of it. But I'm sure many here have it, and just don't know it yet.

Btw, the secondary form, which is what most people with autoimmune diseases have, isn't as serious. It mostly makes you feel cruddy, which is why most of the time, the diagnosis is made at autopsy. Most sites just post about the primary form, which is much more severe and usually reads as "death, death, and more death"; not so with secondary.

Thanks for your reply!

#355851 - 09/09/09 09:29 PM Re: Amyloidosis [Re: barngoddess84]
Megan Offline

Registered: 04/11/02
Posts: 3607
Loc: Canada

#355852 - 09/09/09 09:31 PM Re: Amyloidosis [Re: Kiwi]
Megan Offline

Registered: 04/11/02
Posts: 3607
Loc: Canada
Thanks Kiwi, I hope we can figure it out soon too.

#355853 - 09/09/09 10:15 PM Re: Amyloidosis [Re: Megan]
mamallama Offline

Registered: 05/19/09
Posts: 184
Loc: Big Sky Country, MT
Can someone please call out UNCLE already! Give us a MERCY! REALLY? Why the hell not, huh!

mamallama ------------- "Laughter is life's and sanity's purest medicine" !!Me!!

#355854 - 09/09/09 10:29 PM Re: Amyloidosis [Re: WendyR]
Maggie Offline

Registered: 04/13/02
Posts: 3739
Loc: Ontario, Canada
Excellent point Wendy is making
Example - my husband has hereditary hemotomachrosis. For several years, he was treated for borderline diabetes, arthritis and multiple other symptoms and told to excersise more etc. Nobody looked at the whole picture. When finally diagnosed and phlebotomies started to de-iron, all these other symptoms started to disappear. His iron levels were so high by this time that he should have been dead. He was very lucky.
Anyway, I'm just saying that what Wendy is saying is highly possible and a fresh appraoch from another practitioner may be helpful. Someone who will look at the whole picture of symptoms, meds, etc..

I hope you get answers soon.


#355855 - 09/09/09 10:37 PM Re: Amyloidosis [Re: Megan]
Maggie Offline

Registered: 04/13/02
Posts: 3739
Loc: Ontario, Canada
Sorry Megan. I should have read further before answering.

#355856 - 09/10/09 05:11 AM Re: Amyloidosis [Re: Megan]
mig Offline

Registered: 04/27/02
Posts: 12461
Loc: ON, Canada
Oh Megan, I really hope it doesn't turn out that you have this, even secondary it does not sound pleasant. I will keep my fingers crossed that they discover it is something simpler and much easier to treat. This nausea and vomiting has gone on way too long! I don't know how you are coping so well, I'm sure I would be absolutely miserable with those nasty symptoms.

As far as I know, I don't have amyloidosis and I think some of my lab work is checked for such stuff occasionally. I am surprised it's been so long since you've had a urine test, I thought these were fairly standard with many meds? Err maybe it's because I've always been on ssz. Anyway, I hope with all this new testing, they will soon figure this out for you Megan!

Huge hugs!

#355857 - 09/10/09 12:41 PM Re: Amyloidosis [Re: Maggie]
Megan Offline

Registered: 04/11/02
Posts: 3607
Loc: Canada
omgoodness, your poor hubby! You two must have been so relieved when it was finally discovered. How long did it take? I saw that hemochromatosis was one of the dx on "Mystery Diagnosis" the other night. Sounds like it's not a tough one to diagnose, but you need a good doctor to actually care enough to run the test.

Yes, Wendy does make a good point. People always talk about seeing great specialists or the best hospitals in the world, but in many cases I think it just takes one doctor, no matter what the training, just to care, listen, and give it some thought. That's all. I hope this one is him for me.

I hope this private clinic I'm now a member at is going to be good. I called with concerns yesterday, and the doctor HIMSELF called me back. There's a first. And he said I could email him any time. Another first.

#355858 - 09/10/09 12:53 PM Re: Amyloidosis [Re: mig]
Megan Offline

Registered: 04/11/02
Posts: 3607
Loc: Canada
Thanks Mig. It sounds like it can be hard to diagnose, depending on where the amyloid builds up. Unless you're game for multiple biopsies. lol If I have it, it'll be in my GI system, that much we know. I'm sure my kidneys are fine - I'd have alot of swelling otherwise. I don't really care what it is at this point, I just want to know, because this is getting insane.
I just got word that I was approved for another 12 month leave from my grad program. I guess they sort of have to. They tried to make it really difficult for me to request it, and they'll probably make it really hard for me to finish once I go back. They're pretty touchy about it, only because I'm told that alot of funding is dependent on how fast they get students through their degree programs. I kind of skew the stats and make them look bad. It's not like I mean to though!

#355859 - 09/10/09 01:16 PM Re: Amyloidosis [Re: mamallama]
Megan Offline

Registered: 04/11/02
Posts: 3607
Loc: Canada
Sooo true.... UNCLE!

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