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 Post subject: Re: Rare diseases support
PostPosted: Wed Aug 29, 2012 12:46 pm 
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Hoards Peppermint Jo-Jos
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I just got put on a medication which I have to inject myself with. I have to do it tomorrow, and it's the first time doing it on my own (the first dose I did with a nurse at the hospital). It hurts and I'm scared I'll do it wrong. Blah.

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 Post subject: Re: Rare diseases support
PostPosted: Wed Aug 29, 2012 6:42 pm 
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Should Write a Goddam Book Already
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Disappearing Ink - as someone who injects themselves regularly, I totally hear you on that. But, you will get used to it. It's kinda scary at first, and I know my hand used to shake a bit and I was worried I'd hit the wrong spot or something, but it definitely gets easier over time. You'll be fine! And you can always go back and ask the doctor or nurse for advice if you're having difficulty with it).

Good luck!

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 Post subject: Re: Rare diseases support
PostPosted: Wed Aug 29, 2012 8:46 pm 
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Fair trade, organic mistletoe
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Oh dear God. Kill me. So much pain. Nothing is helping. I hate this.

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"I'd rather have dried catshit! I'd rather have astroturf! I'd rather have an igloo!"~Isa

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 Post subject: Re: Rare diseases support
PostPosted: Wed Aug 29, 2012 8:48 pm 
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Semen Strong
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I am so sorry j-dub <3 <3 <3

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 Post subject: Re: Rare diseases support
PostPosted: Wed Aug 29, 2012 10:29 pm 
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Banned from Vegan Freaks.
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Location: Northern Ontario
j-dub wrote:
Oh dear God. Kill me. So much pain. Nothing is helping. I hate this.


How awful ! J-dub, if your current doctors are unable to diagnose what's going on, could you be referred to another specialist? eg a medical school researcher who specializes in research and hard to diagnose cases with your symptoms? Also if you can't been seen by the appropriate specialist in Canada, you can apply for Provincial approval to see a US specialist and have the costs covered. Given how long this has been going on - could this been an option for you ?

Not sure how I missed this thread but I too walk the freaky medical adventure walk. ::waves:: Advanced thyroid cancer - unknown variant of hurthle cell cancer. Currently in remission after 10 years of radioactive iodine treatments. Major side effects are weight gain from being off of thyroid meds for treatments; salivary gland probs; low calcium; and having 10 doctors who want to follow you as a research project.


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 Post subject: Re: Rare diseases support
PostPosted: Wed Aug 29, 2012 10:36 pm 
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Fair trade, organic mistletoe
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I am seeing the original (useless) specialist I saw next week, and I have an appointment to see the (good) specialist in about 5 months. Sigh. People don't seem to take it all that seriously, despite how debilitating it is.

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"I'd rather have dried catshit! I'd rather have astroturf! I'd rather have an igloo!"~Isa

"But really, anyone willing to dangle their baby in front of a crocodile is A-OK in my book."~SSD


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 Post subject: Re: Rare diseases support
PostPosted: Fri Aug 31, 2012 2:26 pm 
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Fair trade, organic mistletoe
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You guys, I am really, really tired of feeling crappy. And constantly wondering if food will be a friend or a foe.

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"I'd rather have dried catshit! I'd rather have astroturf! I'd rather have an igloo!"~Isa

"But really, anyone willing to dangle their baby in front of a crocodile is A-OK in my book."~SSD


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 Post subject: Re: Rare diseases support
PostPosted: Fri Aug 31, 2012 5:34 pm 
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Nailed to the V
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j-dub wrote:
You guys, I am really, really tired of feeling crappy. And constantly wondering if food will be a friend or a foe.


...I'm afraid it can't be a friend, can it?

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 Post subject: Re: Rare diseases support
PostPosted: Sat Sep 01, 2012 4:48 am 
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fork. Stupid incident just happened -forgot my ID at the town hall -I hadn't noticed, the one who did is bringing it back.
So I feel horrible and people making gentle fun of me are freaking me out. "ooooh that's cute she's so forgetfull ah ah ah".
Well I've always be forgetfull (and cute) but lately... It all has gotten like 10 times worse; I basically forget stuffs all the time -like, as if from now on my short term memory could only store 3 or 4 items instead of 7. I don't know whether or not it's linked to Behçet and to what extend; it's impossible to know, so I just can't be rational, I can't help but wondering "would I have forgotten this without BD?", and I know such a question barely makes any sense.
I'm actually crying now what the fork!? I feel so ununderstood and lonely that it makes it even scarier and... blah. yeah, fork
sad sad sad

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 Post subject: Re: Rare diseases support
PostPosted: Sun Sep 02, 2012 2:44 pm 
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Can't Dance, Isn't Part of Revolution
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hmmm... Emilie, I have memory issues as well. But mine are due to the inability to make the neurotransmitters in my brain. When I started taking methylfolate and SAM-e, it turned the light back on in my brain. I won't ever get memory back that was lost - those memories were never even stored, but from here forward, it's going a whole lot better.

My thought is this: What if you don't have BD? What if you have celiac disease complicated by MTHFR, as I do? What if your rash is dermatitis herpetiformis related to severe celiac sprue? Just a thought.

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 Post subject: Re: Rare diseases support
PostPosted: Sun Sep 02, 2012 5:55 pm 
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Nailed to the V
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Thank you Monidew!

Yes, sometimes I happen to think that maybe I don't have bd ... but honestly the docs I've seen were categoric -wich is, besides, rather reassuring.

This said, I feel ok now. I could take some steps back and think about it. Well I have reasons for beeing forgetful, I'm busy all the time, I live like several lifes -having to switch places, activities and languages... So yes, bd or not, I'm totally entitled to forget stuffs. And as long as people find it "cute", well, I'm not that in trouble after all...

hugs! Enjoy celiac disease! (oooh this one has always sounded so fun!)

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 Post subject: Re: Rare diseases support
PostPosted: Sun Sep 09, 2012 5:50 pm 
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Saggy Butt

Joined: Wed Oct 20, 2010 1:53 pm
Posts: 306
Larisa wrote:
As I predicted, now that I'm walking around campus a lot, my ankle is hurting like hell. Hips and knees, too, but the ankle is the worst.


I'm so sorry, Larisa. I hope your pain improves and that your schedule for teaching/other obligations leaves some time for rest. (I seem to remember that you teach at the college level. If I've misremembered and you do something else, I apologize.)

I also have EDS and I've just gone back to school. The start of term is kicking my butt. (Which is why I'm posting here rather than doing my homework or buying groceries or doing my millions of OT exercises.) I just wanted to say that I can in some way and I hope things are getting easier for you.


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 Post subject: Re: Rare diseases support
PostPosted: Sun Sep 09, 2012 6:43 pm 
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Fair trade, organic mistletoe
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I don't think I updated: I'm getting my gallbladder out! Probably not until December or so (consultation with the surgeon is November 20), but it should make things a lot better. I'm hoping the IBS that has come with this gallbladder awfulness disappears too...

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"I'd rather have dried catshit! I'd rather have astroturf! I'd rather have an igloo!"~Isa

"But really, anyone willing to dangle their baby in front of a crocodile is A-OK in my book."~SSD


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 Post subject: Re: Rare diseases support
PostPosted: Fri Dec 21, 2012 12:32 am 
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Drunk Dialed Ian MacKaye
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Posts: 1803
Location: New Portleans
I have the biggest forking muscle knot in my left buttock that is trying to swallow me hole. Moving my leg feels like ripping flesh. Muscle relaxer not helping. Sucks.

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"Stupid society. I'm gonna go put on bikini kill."~Susie Tofu Monster
"Kittee is wise. Listen to Kittee."~Aruna--> the PPKr currently known as mumbaikar

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 Post subject: Re: Rare diseases support
PostPosted: Fri Dec 21, 2012 4:51 am 
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Nailed to the V
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ouch!!!!!
too bad the relaxer doesnt help; (when nothing works I put chinese menthol balm. Doesn't cure anything but its warm) (and the smell is funny)
Hope you can rest your leg and get well soon! hugs!

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 Post subject: Re: Rare diseases support
PostPosted: Fri Dec 21, 2012 4:57 am 
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Nailed to the V
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J-dub, Kittee: http://www.youtube.com/watch?v=tUd8Qs_DAZ0

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 Post subject: Re: Rare diseases support
PostPosted: Sun Dec 30, 2012 4:35 pm 
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If you were here Kittee, I'd massage your asparagus.

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 Post subject: Re: Rare diseases support
PostPosted: Sun Dec 30, 2012 5:32 pm 
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" Two sticks of asparagus are walking down the street. One gets hit by a car and is rushed to the hospital. After performing surgery, the doctor comes out and tells the other asparagus, "I have good news and bad news. The good news is, your friend will live. The bad news is, he'll be a vegetable for the rest of his life."

(...Ok I just lazily googled aspargus+joke)

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 Post subject: Re: Rare diseases support
PostPosted: Tue Jan 01, 2013 2:24 pm 
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Drunk Dialed Ian MacKaye
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lycophyte wrote:
If you were here Kittee, I'd massage your asparagus.

yay!

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XGFX: Vegan Gluten-Free Stuff
"Stupid society. I'm gonna go put on bikini kill."~Susie Tofu Monster
"Kittee is wise. Listen to Kittee."~Aruna--> the PPKr currently known as mumbaikar

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 Post subject: Re: Rare diseases support
PostPosted: Fri Mar 29, 2013 11:22 am 
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Dying from Nooch Lung
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So, after being pretty much asymptomatic for years, I'm afraid my PKD is jumping out and saying boo. I noticed blood in my urine earlier this week, went to the doctor to rule out an infection, then on Wednesday night I started getting serious pain in my right kidney and nausea. A sonogram and x-ray have ruled out a kidney stone. The only thing I can think is that one of the cysts in my kidney ruptured and that's what's causing all the problems. My GP has prescribed some heavy pain-killers and anti-nausea meds, and I hope it goes away on its own, but... bleah.... I feel like utter shiitake.

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 Post subject: Re: Rare diseases support
PostPosted: Fri Mar 29, 2013 4:24 pm 
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Dislikes Rick Santorum
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GraciaKai wrote:
Sacroiliac joint dysfunction!

I wouldn't call this a disease let alone rare. But more of an ailment that likes to bother me. My left hip and SI joint get inflamed and it causes general pain, discomfort, leg pain, sciatica type symptoms, and as a result I can't eat gluten anymore. Fun times!



i realize you wrote this in August but if you still come to this thread can you expand on this a bit for me and why that means you cant eat gluten anymore??

ive never been given like an actual named diagnosis but i got to the chiro fairly regularly because my sacrum twists weird and my sacro-iliac joint is often out of whack. for me it's always the right side.

before i was pregnant it meant i had to go to the chiro every few months to get whacked back into place and normally that was enough to keep things ok since im fairly active. but when i let it go and dont go to the chiro it gets REALLY BAD.

now that im pregnant i am basically in constant pain in my right hip and low back. i have to go to the chiro weekly and once i skipped a week cause i was like "this never makes me feel BETTER" but then it got so bad i couldnt go up and down stairs or get in and out of my car. sleeping is a bisque because i wake up super sore no matter how i sleep or how many pillows i jam under my stomach.

i never thought about how diet could affect any of this.

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 Post subject: Re: Rare diseases support
PostPosted: Fri Mar 29, 2013 9:02 pm 
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Disappearing Ink wrote:
I just got put on a medication which I have to inject myself with. I have to do it tomorrow, and it's the first time doing it on my own (the first dose I did with a nurse at the hospital). It hurts and I'm scared I'll do it wrong. Blah.



I know this was posted awhile ago, but I just wanted to say that I'm about to go on a self injection medicine also! It's for crohn's disease as well. Hopefully it will get rid of my symptoms all the way for awhile! I hope the injection worked for you.


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 Post subject: Re: Rare diseases support
PostPosted: Fri Mar 29, 2013 9:44 pm 
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Inflexitarian
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I have Birt Hogge Dube syndrome. Very rare. No pain, just need an MRI on my kidneys every 3 years, to be on the lookout for tumors, and also avoid deep sea diving so my lungs don't spontaneously collapse. There's not much else I can do.


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 Post subject: Re: Rare diseases support
PostPosted: Tue Apr 02, 2013 10:47 pm 
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Nailed to the V
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Sounds like you're taking it in stride JillW. I'm proud of how brave everyone in this thread is.

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 Post subject: Re: Rare diseases support
PostPosted: Tue Apr 09, 2013 5:06 am 
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Huffs Nutritional Yeast

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Posts: 101
Location: Perth, Western Australia
Larisa wrote:
Ehlers Danlos Syndrome. Symptoms haven't been too bad lately, but I'm kind of expecting a flare-up when the new semester starts.

Me too! Having a rough time at the moment due to related conditions (do you also have Chiari/Syringomyelia/Cervical Instability).


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