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#355800 - 09/08/09 01:57 AM Amyloidosis
Megan Offline


Registered: 04/11/02
Posts: 3607
Loc: Canada
Anyone have any experience with amyloidosis? I may be adding this "-osis" to all my "-itises". Good fun. Testing has yet to confirm it, but I have the symptoms and it can be associated with autoimmune disorders (secondary amyloidosis).

I've put in many, many hours researching this in the med library... now just curious if anyone out there in our little family has it. Any takers?

My symptoms are more of the GI type and neuro type - chronic nausea and vomiting, hair loss, neuropathies, and fatigue. As if AS wasn't enough.

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#355801 - 09/08/09 04:25 AM Re: Amyloidosis [Re: Megan]
WendyR Offline


Registered: 12/23/08
Posts: 5231
Loc: BC, Canada
Hi Megan,

I don't have any experience with this but the symptoms sound like side effects to some medication! Yuck - sorry to hear it.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil

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#355802 - 09/08/09 04:26 AM Re: Amyloidosis [Re: Megan]
badbackytoo Offline
Apprentice_AS_Kicker

Registered: 08/29/09
Posts: 75
Loc: FL
i am sorry for you, this is plaque buildup which affects many organs and is generally very bad to have. my prayers are with you
_________________________
I have a fused necky at C 5-6-7 with metal, multi level HNPS, bilateral ''tennis elbow'' lateral epicondylitis, swollen tendons all throughout my body cranky and in pain, on too many meds and none of them work for very long. currently on dilaudid, klonpin, prilosec, and other stuff.

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#355803 - 09/08/09 07:12 AM Re: Amyloidosis [Re: Megan]
Jaybird Offline
Silver_AS_Kicker

Registered: 03/23/07
Posts: 1461
Loc: The Matrix
This is just rotten. I hope you figure out what you need to and get the care you require. My prayers are with you.
_________________________
Kind Regards,
Jay

Almost all of us long for peace and freedom; but very few of us have much enthusiasm for the thoughts, feelings, and actions that make for peace and freedom. - Aldous Huxley

Was the government to prescribe to us our medicine and diet, our bodies would be in such keeping as our souls are now. - Thomas Jefferson

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#355804 - 09/08/09 07:22 AM Re: Amyloidosis [Re: Megan]
Farinelli Offline
Silver_AS_Kicker

Registered: 08/14/07
Posts: 1489
Loc: Pennsylvania
Hey Megan! Haven't heard of this. I will have to research it a little bit. I do have chronic nausea but I have had that before AS started. I have a bunch of food allergies. I do have neuropathy and fatigue. Hmmm! This is interesting. I will have to do some digging. Thanks for the post!

Craig

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#355805 - 09/08/09 10:27 AM Re: Amyloidosis [Re: WendyR]
Megan Offline


Registered: 04/11/02
Posts: 3607
Loc: Canada
Hey Wendy - how are you doing these days? mtx working?
I'm pretty sure it's not side effects - even when things AS-wise were good, and I was off all medications for a couple of months, I was still not keeping down my cookies, so that's been ruled out. Honestly, if it weren't for these new issues, I would be fine - NSD is keeping my AS in check really well.
Hugs to you.

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#355806 - 09/08/09 10:29 AM Re: Amyloidosis [Re: badbackytoo]
Megan Offline


Registered: 04/11/02
Posts: 3607
Loc: Canada
Hey Badbacky, thanks for your reply. Let's hope I'm all wrong on this one and it's just some weird vitamin/mineral deficiency I have! Bet it would be easier to treat.
Take care.

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#355807 - 09/08/09 10:31 AM Re: Amyloidosis [Re: Jaybird]
Megan Offline


Registered: 04/11/02
Posts: 3607
Loc: Canada
Hi Jay, there seems to be an abundance of rotten-ness going around here these days. Time of year? It's been a bad summer for just about everyone. Maybe we can blame the economy.
Hugs.

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#355808 - 09/08/09 10:31 AM Re: Amyloidosis [Re: Megan]
ineptwill Offline
Titanium_AS_Kicker

Registered: 03/31/02
Posts: 5184
Well years ago I did go out with a girl called Amy Lloyd. She was a delight and full of fun. I don't think she had AS or an atis but she did have a sister. Oh sis, Amy would often cry out, oh sis. She did this so frequently that it caught on but was shortened for ease of pronounciation.

Hence she became known to her friends as AmyLloydohsis, but, I dont think she had a bad back, and she was fickle anyway, for she ran offr with the plumber, who was a bit wet...........rather like me...!

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#355809 - 09/08/09 10:36 AM Re: Amyloidosis [Re: Farinelli]
Megan Offline


Registered: 04/11/02
Posts: 3607
Loc: Canada
Hallooo Farinelli, how are things treatin ya? I love how you're always at the ready for digging and researching. lol Not like me at all. ha!
Do your food allergies make you barfy? I don't have food allergies, just antibiotic allergies and hoo nelly I just look like a puffer fish, no nausea.
I'm actually a little surprised amyloidosis doesn't come up around these boards a little more - it's not terribly uncommon in those with autoimmune disorders, but then again, it's hard to diagnose. It's usually diagnosed at autopsy. That's a bit late to treat by then, usually. lol

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