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#355820 - 09/08/09 08:38 PM Re: Amyloidosis [Re: Karen_the_Mouse]
Megan Offline

Registered: 04/11/02
Posts: 3607
Loc: Canada
Thanks Karen. I hope you're doing ok these days... you've been quiet as a mouse!

#355821 - 09/08/09 08:58 PM Re: Amyloidosis [Re: WendyR]
Megan Offline

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

How long have you had these symptoms? Do you think this has come on suddenly?

Wendy, that is great news that you have no side effects. Some people swear it's their miracle drug, and I say do whatever works.

And to Sue, Wendy, and Molly... I should just explain...

The nausea/vomiting started about 1.5 years ago. I would get "flares" of it that would come and go - with no real pattern or identifiable cause. Docs said to never mind it - it's always subclinical. It's just been getting gradually worse, and this latest barfy flare has lasted 3 weeks so far and is just getting worse. I can't even keep down water unless I'm taking gravol suppositories (anti-nauseant). Even with the gravol, it's so hard to force food in me - it just makes me bloated and feel awful. But I can still eat a bit, and take in water - and I have no diarrhea or anything strange going in that department.

I also know that even if I do get food in me, I'm not absorbing something - I've lost so much hair. Used to have really long pretty hair, but I've had to cut it super short because the top parts won't grow more than 2 inches before it falls out and repeats. There is always hair everywhere around here. I'm worse than the cat! lol

The extreme, constant nerve pain in my thighs started 6 months ago. After seeing 3 neurologists, it was diagnosed as small fiber neuropathy, but my GP thinks otherwise. I take 3000mg of gabapentin for it, and morphine if I feel I need it. Even if I'm not taking morphine, I'm still sick, so that's not the culprit.

And I'm just so so so tired. I'm so sick. So sick that I'm really very scared. I don't know what else to do, and I'm too tired to advocate for myself. My boyfriend is so busy with work that he's only around a few days a month now. My dad is still recovering from his brain injury in Feb, and my mom has to take care of him - and she's got so many health issues of her own to deal with - I have no idea how she does it. There is alot of stress in my life as well, so that surely can't help.

I've paid a rather large sum to be a member of a private clinic with GPs here, but everything seems to move...just... so... slowly. Next week bloodwork. Follow-up the week after. Then more bloodwork a week after that... etc. So frustrating. Meanwhile I'm down 12 lbs in 3 weeks so far. And I have a really big tongue now for some strange reason, and a few more really weird, but again, subclinical symptoms. So I get told not to worry....

My AS is under control with NSD. I think this is something else.

So... ya... apologies for the very long rant-ish post. That's why I haven't been around much and posting anything very useful lately. Just really, really tired.

#355822 - 09/08/09 09:15 PM Re: Amyloidosis [Re: Megan]
Zanni Offline

Registered: 01/11/09
Posts: 326
Loc: usa
I would hate to add anything else! Seriously, but wow! I will continue to read this post out of curiosity! Its like all the diseases have those symptoms Right? Curiosity is a wonderful thing!

#355823 - 09/08/09 10:05 PM Re: Amyloidosis [Re: Megan]
WendyR Offline

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

I remember really worrying about you when you had the shingles - you just seemed to get it SO badly. Now this! Something's definitely not right. Hair loss, nausea, big tongue - something's out of whack.

I know you're on the NSD but what exactly are you eating? Is there any chance that you're missing some critical nutrients? I'm not saying the docs are wrong (although I actually hope they are with the kind of diagnosis you're talking about) but I'm wondering whether a naturopath would look at the whole picture with you. The docs have a tendency to look through blinkers at a narrow slice of you - just your AS or just your neuropathy etc. I've heard of situations where patients became deathly ill because of the treatments for their diseases and the fact no one was paying attention to their whole body's health and whether the various treatments were interacting with each other to cause serious negative effects.

I feel like I want to whisk you over to BC and take care of you - that seems to be one of the missing components. As ill as you are, you need someone to be looking out for you. Some serious nursing you back to health.

Please take it easy, minimize your stress and try to take the best care of yourself possible.


Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil

#355824 - 09/08/09 11:42 PM Re: Amyloidosis [Re: Megan]
doh Offline

Registered: 11/18/08
Posts: 48
ive read a little about secondary amyloidosis megan (im sure you've scoured the internet by now).

what ive found suggests that in AS it occurs in 7-10% of patients, usually with sever and long-lasting disease, though it has been described in patients with severe but short disease duration. of those 7-10% only half become symptomatic in the short term (protienuria etc). one older piece of literature described the prevalence of amyloidosis in AS patients at autopsy as high as 20%!

i guess you'll be getting your pee tested for protien, and possibly and abdominal fat pad biopsy? i think some docs test for serum amyloid A in the blood too, but im not sure how that level correlates to actual disease as the SAA level is elevated in most AS patients with active disease.

there are case resports of patient having their amyloid disease regress with tnf-alpha treatment.

#355825 - 09/09/09 01:39 AM Re: Amyloidosis [Re: doh]
Megan Offline

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

there are case resports of patient having their amyloid disease regress with tnf-alpha treatment.

... and the neuropathy started, and the nausea got really bad 3 months after I stopped taking enbrel. This was another one of the factors that led my doc to think amy. But I only stopped taking enbrel because a) it seemed to be decreasing in efficacy, and b) NSD was working well. Sure hope I didn't inadvertently do this to myself.

The doc is doing more bloodwork now, probably to rule out more things. The first round of bloodwork didn't show one single abnormality. I really, really want it to be something else, something simple.

#355826 - 09/09/09 01:43 AM Re: Amyloidosis [Re: Megan]
Sue22 Offline

Registered: 01/13/08
Posts: 21346
Loc: Upstate NY
please don't blame yourself or think its something you did. i do that kind of thinking to myself all the time and realize i probably shouldn't.

just let us know what they find out and hoping for you that its something simpler too,


Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

#355827 - 09/09/09 02:35 AM Re: Amyloidosis [Re: WendyR]
Megan Offline

Registered: 04/11/02
Posts: 3607
Loc: Canada
THanks Wendy, you're such a sweetheart. My parents are in the interior of BC (parents were both born on the island, I spent most of my childhood summers on Hornby Island), and my mom would have whisked me back home tonight to take care of me if she wasn't so sick herself and having a colonoscopy done tomorrow in Kamloops. This is her second scope in a short time - it looks like she might have colitis, in addition to AS, and a host of other autoimmune goodies. And since Glen just forked over a serious sum for me to be part of a private clinic here, it doesn't make much sense to leave it behind, you know? I always miss my mom when I'm sick. lol I'm such a suck. I know she worries about me too much, and that's not good for her either. Actually, I recently got back from a week there - I didn't think my mom was going to let me back on plane when I left. I'm really close with my parents, still their little girl.

I haven't eaten much in the past 3 weeks, but before that, trust me, I am a freak about healthy eating; so is my boyfriend. He's the one who makes sure I only eat the toppings off the pizza and not cheat on the NSD. lol My bloodwork so far is all normal - vitamins, protein, etc. In the past few weeks I've had to get creative to make sure I'm getting at least a little bit in me so that I don't ruin myself - lots going through the blender.

My new doc is known as "Dr. House" in the clinic, and my first (and only so far) visit with him was 2 hours. He agreed that my previous doctors weren't looking at the whole picture, so I hope that means he's going to improve on that. That's good pointed that out... right? I hope. He knows "the whole person" is a big thing for me anyways; I emphasized that. He doesn't seem very good at following through on some requests though... a whole other story.

For meds right now, I'm only taking a bit of morphine and a load of gabapentin - I've wondered if somehow the high dose of gaba could be doing something to me...hmm... but the nausea started long before I was introduced to gaba. I've taken morphine on and off for years with no probs, so I don't think that's it either.

Also, when I spent a month (mid july to mid aug) on nabilone (synthetic marijuana) the nausea almost totally disappeared. That was supposed to help the neuropathy (which it didn't at all), so it was discontinued, and that's when the vomiting came back with a vengeance.

No one has yet to order a urine test, which is strange. Come to think of it, I haven't been asked for a urine test for... wow, probably a decade. I'll get on that.

I know there is something going on here... I just bugs me that I can't figure it out. I can always figure it out. I was the one who first figured my mom and I had AS. One thing that scares me - if you google amyloidosis and tongue - that's what mine looks like. Puffy with scalloped sides.

I hit a really low point a couple of nights ago... and ended up calling Glen and telling him I needed him home. Not sure if that went over very well, but I know I'm at the point where I need help. He's got his own drama to deal with in his own life... everything is so complicated right now. And here I am blabbing on again.... thanks for listening Wendy, and anyone else who's managed to stay with me through my whinging tonight. lol Just one of those days, you know?

#355828 - 09/09/09 06:05 AM Re: Amyloidosis [Re: Megan]
CiaraCeasg Offline

Registered: 10/26/08
Posts: 843
Loc: usa
OK, puking, autopsies, suppositories, hair on the floor.... Megan only you could make this post and still sound like you're smiling! Life is always complicated, so don't give that another thought! Any chance they'll give you nabilone again? Or do you have to prove you aren't getting nutrients? God, I hope you keep your electrolytes, et al up Megan, that alone will make you feel so much better! I would think between the gravol and the morphine you want to sleep all the time... are you able to? Is sleep good? What are you doing to forget you're sick everyday? Any new birds visits? I have three baby screech owls! I took this picture sitting at my desk! He was staring at my (totally beyond frustrated) cat...They're still at the totally ugly stage, but I thought you'd like them;

I hope you have a feel good spell really really really soon, Megan, get plenty of water,
ps, he's like 5 inches tall!

#355829 - 09/09/09 06:46 AM Re: Amyloidosis [Re: Megan]

Hi Megan,
Sorry never heard of this I hope you feel better soon and get some good answers.

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