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 Post subject: Re: Rare diseases support
PostPosted: Thu Apr 18, 2013 10:59 pm 
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Drunk Dialed Ian MacKaye
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LittleChicken wrote:
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).


No. I've got mitral valve prolapse, but that seems to be the only non-joint thing.


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 Post subject: Re: Rare diseases support
PostPosted: Mon Mar 23, 2015 11:42 am 
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I am resurrecting this thread because I just got diagnosed with Mixed Connective Tissue Disease (with high likelihood of developing in to lupus) and Joint Hypermobility Syndrome ~ I'm on a bunch of new meds for the first time in my entire life. Like, I literally have only taken vitamins for YEARS and now I have to take 3 pills a day that make me nauseous and dizzy? gross.
All of this is very new and kinda scary to me. How is everyone doing?

mostly I'm disappointed because my rheumy told me I couldn't do yoga anymore since my joints were all too loose.

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 Post subject: Re: Rare diseases support
PostPosted: Sat Mar 28, 2015 8:09 pm 
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Drunk Dialed Ian MacKaye
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If the meds are making you nauseous and dizzy, talk to your doctor. Also, I've got a lot of experience with joint hypermobility -- feel free to talk to me if you've got questions about that part of it.


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 Post subject: Re: Rare diseases support
PostPosted: Sun Mar 29, 2015 8:04 pm 
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booberthefraggle wrote:
mostly I'm disappointed because my rheumy told me I couldn't do yoga anymore since my joints were all too loose.


i still do yoga. i just had to stop doing certain things. i don't do anything that feels like a stretch, anything that puts joints in certain positions, or anything that puts weight on my wrists. which does actually still leave me with enough to do because i'm more focused on breath and trying to be aware of where my body is.

i'm not saying that you should do anything against your doctor's recommendation. i just mention it because my experience has been that lots of doctors assume that the only thing in yoga is extreme stretching and arm balances and so they issue blanket prohibitions even though one of those yoga classes where you lie on cushions and meditate might be totally okay and an awesome idea.

i'm sorry things are rough with meds and such right now. you can pm me too if you ever want to talk or are looking for resources.

i hope you can get some relief from the nausea and dizziness. take care.


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 Post subject: Re: Rare diseases support
PostPosted: Tue Mar 31, 2015 12:32 pm 
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so it turns out that the nausea and dizziness was just my body getting used to the meds! I'm doing good now (also: I am learning that "take with food" is not just like, a casual suggestion)

thanks for the tips! unfortunately the yoga I was doing was all hardcore stretching, balancing, and wrist-heavy stuff which is what I'm in it for. I don't really like the more chill/slow pillow stuff so I just have to find other things to do.

larisa Imma hit you up for joint questions soon.

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 Post subject: Re: Rare diseases support
PostPosted: Sat May 23, 2015 11:06 am 
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heya! anyone have any tips/tricks for support groups when there aren't enough people who have your disease to HAVE support groups? I do better with in-person, and unfortunately don't get much from online support (leftover from NA and AA meetings probs)

I have MCTD but my symptoms are leaning heavily on Lupus right now so I e-mailed a lupus support group and asked if I would be allowed to attend meetings even though I technically have a different soft tissue disease.

anyone have any suggestions etc?
<3
boober

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 Post subject: Re: Rare diseases support
PostPosted: Sun Dec 20, 2015 5:39 pm 
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I've been super super fatigued lately. I mean, work has been ridiculously stressful too, but it's more than that. I've been on vacation for a week and a half and I'm still exhausted. I find I have very little energy to do normal things and if I do normal things (like meeting a friend yesterday), it takes it out of me for days. I've always been lower energy than my peers (even after things like anemia and thyroid issues are corrected), but lately it's really getting to me. I know that one of the symptoms of PKD is fatigue, but I always thought my kidney function was not far gone enough to account for that. (The worse your kidney function, the more prone you'll be to fatigue.) I have an appointment with my nephrologist in a month and I suspect my kidney function will have dropped some.

I've recently joined a PKD group on FB and it's interesting reading about other people who are at the same stage of the disease (stage 1 and 2, which I suspect I'm somewhere in between) and a lot of them also talk about fatigue. So on the one hand, it's nice to know it's not just me. On the other hand, it's a bit discouraging knowing that it's pretty much only going to get worse from here.

(Of course, my anxiety issues are acting up a bit too, which doesn't make me less exhausted either.)

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 Post subject: Re: Rare diseases support
PostPosted: Fri Jan 15, 2016 12:45 am 
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ugh lepelaar I'm sorry. It's so frustrating when your energy is just nonexistant :( I hope the fatigue eases up a little <3

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 Post subject: Re: Rare diseases support
PostPosted: Fri Jan 15, 2016 12:49 am 
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I'm a cranky bisque-y crasshole right now because the chemo i'm on isn't working. this is my third in a series of steadily-more-intense treatments and it's been 3 months with no improvement, instead I just continue to get worse. what it HAS succeeded in doing is making my hair thin, my skin dry, and my eyebrows patchy.

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 Post subject: Re: Rare diseases support
PostPosted: Wed Jan 20, 2016 12:57 pm 
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Tofu Pup

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Hi guys I am new to this forum. I have diagnosed with Crohn's disease few days ago. Any tips or advises ? Thanks !


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 Post subject: Re: Rare diseases support
PostPosted: Thu Feb 11, 2016 1:00 am 
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welp, the mid-dose chemo treatments officially didn't work!
on to experimental treatment #1: mycophenolate (an anti-rejection drug for people with organ transplants) !!
!!!!!!
!!
!!!!
everything is great and wonderful and i am not freaked out about anything.

HAVING A RARE-ASS DISEASE IS SO MUCH FUN

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 Post subject: Re: Rare diseases support
PostPosted: Thu Feb 11, 2016 5:29 am 
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Aw crepe! Hugest good luck with the experimental treatment.

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 Post subject: Re: Rare diseases support
PostPosted: Mon Feb 15, 2016 1:53 am 
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I had a funny but not experience this week that I felt like sharing with people who might be likeliest to understand. I went to my night class and somewhere near the end of class, I popped my wrist. I used to be able to pop my wrists back really easily, but lately it's hit or miss. Of course it was a big old miss. I sat for the rest of the class with my hand curled and turning colors, trying unsuccessfully to coax the joint back into a more favorable alignment.

The instructor dismissed us and I started slowly packing up my bag with one hand while cradling my other wrist to my body. While I was doing this the other student had gotten absorbed in something on his phone, because the universe hates me, and he was just. not. leaving. So I was there with just one working hand, trying to figure out how to get my longass winter coat on. (The Lincoln from Vaute Couture. I have trouble zipping it up on my very best day.)

In the end I laid the coat flat on my desk and, sitting in my chair, used my legs to pin the coat to the table. I managed with quite some effort to get the two sides of the zipper together, but I simply didn't have the strength to pull the zipper with one hand. I did the only reasonable thing. I held the bottom of the zipper and zipped up the coat halfway with my mouth. I then picked up the coat and shimmied into it from the top.

I finished zipping it, put my backpack over my stomach, and wished my extremely horrified classmate goodnight.

I am so cool.


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 Post subject: Re: Rare diseases support
PostPosted: Tue Mar 01, 2016 5:34 am 
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paperweight! that's terrible but also very impressive and cool


I'm currently 2 days out from starting on cellcept which i am reading about and it's FREAKING ME OUT

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 Post subject: Re: Rare diseases support
PostPosted: Wed Mar 02, 2016 2:45 am 
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Drunk Dialed Ian MacKaye
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Is anyone in this thread on Low Dose Naltrexone? I started taking it about 5 weeks ago for my auto immune spinal arthritis BS and it's working so so so so well. It's meant to help with all kinds of auto immune issues, so I'm just putting it out there, in case anyone wants to talk about it.

xo
kittee

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 Post subject: Re: Rare diseases support
PostPosted: Thu Mar 03, 2016 1:39 pm 
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kittee I hadn't even heard of that before I just googled, glad it's working so well for you!


Can I take a moment to bisque about specialty doctors???
My current Rheumy is retiring, so he suggested I switch to the fancy WashU rheumatology department since I'm such a weird specialty case and they've got the best facilities/doctors/funding in the area. So I had to get my records sent over AND I had to have my doctor write a letter recommending me, and send all the patient notes from every visit over the last year, and have him sign a form stating that I wasn't a "problem patient." I have a rare-ass disease and some doctors are in to that shiitake so they took me on, but I couldn't get an appointment until June 20th BUT I'm on medication that requires I see a Rheumatologist in person every 6 WEEKS for the first 6 months I'm on it. which means I ALSO had to make an appointment with a DIFFERENT Rheumatologist for the 4 months between now and the time of my appointment.

UGH
like, I know it's a good idea and they represent the best care I'll probably get (or at least the most innovative, or something, but ugghhhhh snobby people who also make me wait 4 months.

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 Post subject: Re: Rare diseases support
PostPosted: Sun Mar 06, 2016 9:32 am 
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kittee: I don't have experience with that medicine, but I'm so glad it's working for you. I hope you continue to see positive effects. <3

boober: That seriously sucks. I'm so sorry you have to wait so long. Also the "problem patient" form is really obnoxious. It seems to me that the relevant question is whether someone has a condition requiring the particular expertise of these specialists. Surely even "problem patients" are deserving of health care? (Also, it has been my experience that inadequate medical care can lead to people being labeled "problem patients." If I were a doctor with specialized experience and knowledge, I wouldn't want to write off people based on the testimony of doctors who might be less knowledgeable in my specific subfield.)

I hope when you finally get to see these doctors they turn out to be decent people and that they are able to provide you with good care. I hope too that you get good care in the meantime.


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