Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Amyloidosis

http://www.medicalnewstoday.com/articles/147963.php

Karen - a bit here on amyloid polyneuropathy. Might be worth reading, and also, can search medical news today for any other info they have on amyloid/amyloidosis problems.

Molly C (France)

Hi, Megan:

I have corresponded with several people with AS and resultant amyloidosis. The increased IgA (immunoglobulin) when the disease is active somehow preferentially forms depositions in various tissues--like kidneys and liver--in some smaller portion of those with AS.

One fellow in Australia had this and might have tried long-term fasting (being in a state of dietary ketosis might help to eliminate the amyloid) to help him, but I lost touch after a few months and sorry that I do not know the outcome.

Good luck with this,
John

I so needed your humor and the laugh this a.m. Thanks. I know nothing about the disease either.

Possi

Hey CC, I can't see that picture, but I would LOVE to! How lucky to have baby owls within camera shooting distance! It was hilarious when I had the baby magpies in the tree across the street - they're such big, awkward babies. Too bad my cat just doesn't get that he's supposed to like to hunt. He just doesn't get it AT ALL. Such a love, but he'd last all about a day and a half in the wild, he's so clueless. A lover, not a fighter, that one. The 2 cats I had growing up sound more like yours - I bet yours is doing that cute "chatter" thing cats do when they go absolutely mental when they see a bird outside.

I have a whole stash of nabilone still here, but instructions not to take it anymore. It's tempting though, let me tell you. All my symptoms were intensified when I came off it last time, so I'm not sure if I want to go through that again either. And it just made me SO stoned. I mean seriously. Even at the lowest dose. I'd need someone here to take care of me in that state. lol I'm thinking about talking to my doctor about taking it again though anyways...

It might be the end of my relationship if I do take more meds, esp the nabilone - Glen is convinced the reason I'm worse right now, is because I took the nabilone in July/Aug. He's always convinced every drug makes me worse, actually. It's a very, very touchy subject in our relationship, and it's something we're going to have to work though. I need a doctor to explain things like that to Glen. Things like the meds are being used to HELP my neuropathy - I had to keep increasing the dose to help the pain, and Glen was convinced the gabapentin/morphine was making the neuropathy worse. But I swear the neuropathy ITSELF was getting worse, and I needed more meds to help control the pain, you know? But there's no way to prove that.

Electrolytes are normal - bloodwork shows they're fine. I'm sure I'm getting enough liquid in me with the gravol. I think today I'm doing slightly better too. I sleep about 12 hours a day lately.

I won't give up. It's been trying at times. Lots of very low points lately. My cat's been hilarious though. Us sleeping 12 hours a day is making him one seriously happy cat. I spend alot of time reading, sort of (my attention span is shot lately) and watching funny movies - I figure laughter is probably the best medicine right now. I was trying to find upbeat stuff on TV (I honestly haven't watched much tv in my life), but do you know how hard that is these days? It's crazy. No wonder depression is on the rise. Even the comedy channel was sort of all dark humor. Ya can't win. Thank goodness for you tube. lol Take care!

Thanks Kevin. Feel free to give Will a hard time for me. It makes me laugh.

Hey Meggie, I'm so sorry to hear that you have yet another thing to deal with. Good grief, it's so damned unfair.

Did a quick read on the Mayo Clinic site and the Amyloidosis Foundation website. I have a lot of those symptoms, too. Kind of made me think, you know? I noticed that secondary Amyloidosis tends to resolve if the underlying infection or inflammation is dealt with. That this started after you came off the Enbrel could be the biggest clue.

And don't you dare try to blame yourself for this, or beat yourself up for needing Glen or your mom! If you need help, you need help. End of story. It's really too bad that Glen's work is taking so much of him right now. Since that's where he needs to be, there isn't much you can do about it. But I ask you, what would he have said in, say, a year if you told him you'd needed him but hadn't wanted to bother him when he was so busy. If he's anywhere near to loving you as much as I think he does, he would give you a hard time for not calling him. Yes?

Please know I'm pulling for you and I truly hope that, well, I don't quite know what to hope. I don't want you to have a dx of this because that would just be too awful. But I don't want you to go without a dx on these symptoms any longer, because it obviously needs treatment. So, I'll just leave it at I'm hoping for the best for you in this.

Warm hugs,

Thanks John. I hope you're well these days. I'm not sure if I'd want to know the result of that fellow. Prayers to him.

I know this is a very, very low chance that I'd have it. From what I read, I haven't had AS long enough or severe enough to get amy, but who knows. It just scares the crap out of me that my dr is thinking it too. We've ruled out so many other things... just got a call to go down and do a urine sample to check my kidneys. Here we go. I wish he'd just order the biopsy and get it over with. Not sure what the delay is with even more bloodwork? I never get to see the bloodwork request form, not that I'd understand it anyways. Hate being kept in the dark. The latest bloods are being sent to the US for analysis.

I'm a big believer that the body knows what it's doing, and I've wondered if be being sick is my body's way of telling me I should fast, or that I'm eating something I shouldn't be. Funny that you mentioned that.

Megan, I hope this Dr. House can figure out what the true cause is. Hopefully he has a clue and knows to look for something infectious. Given the fact that it sounds like you are withering away to nothing, can you can some marijuana and use it not only to calm the nausea, but to possibly increase your appetite? I don't know if it'd have the latter effect on you or not, but it sounds like you need some calories in addition to your nutrients.

Girlfriend... Glen just wants you to be better so bad!... 12 hours sleeping, can't really read.... yes, you need a whole bunch of Doonsbury and Calvin and Hobbes books. Totally. Try here;

cc's owl

lol.