Re: Facebook and other stuff

[Guest guest]

Barb,

Hi! The facebook group can be found at

https://www.facebook.com/groups/214841771902441/

I don't have RA, but I have MS which is usually considered to be an autoimmune

disease. A lot of the symptoms can overlap with spinal issues, so it makes it

tricky (and often impossible) to discern which thing is acting up!

Have you joined an RA support group too? I belong to flatback groups and to MS

groups. It's really helpful to hear what other people go through and how they

adapt to things. I wish you the best with finding relief for your RA!

Have you already had revision?

>

> I am having trouble connecting to the feisty group on Facebook. Any advice

would be appreciated. Also I have recently been diagnosed with rheumatoid

arthritis. Anybody else with scoliosis have this auto immune disease? It's

frightening because you can get these nodules anywhere in your body. My ribs

have been hurting lately and I wonder if there is any connection. The meds I

have to take are almost as bad as the disease. I take methotrexate which is a

cancer drug and plaquinal which is an anti-malaria medication. Both make me feel

sick and I just want to sleep all the time. However, they have taken away most

of the joint pain. In reading about RA I was surprised at how if affects your

quality of life. I am looking for a support group as I am pretty isolated right

now and need to talk with people who are going through the same thing.

>

> Wonder if this is in any way related to my scoliosis. I think I will send an

e-mail to the person in Dr. Bridwell's office who is coordinating this

study.Maybe they can learn something from me.

>

> By the way, my mother was 40 when I was born. I always thought that her age

had something to do with all my teenage health problems. No one else in my

family has anything like this.

>

> Take care everyone, Barb

>

[Guest guest]

Barbara, I'm so sorry to hear about your rheumatoid arthritis. Haven't you served enough time under the watchful eyes of medical specialists ranging from orthopods to heart valve surgeons? Now you need rheumatology too? Oy veh.I wish I could tell you whether there's any connection with scoliosis. I've heard murmurings from time to time about a connection between scoliosis and autoimmune disorders in general, but nothing solid or substantive.My estranged spouse has had RA for many years. He had a miserable time at first because they had him on that old-standby-combo, methotrexate + prednisone. You don't want to know what he went through with side effects from the steroid. But for some years now, he's gone in every month or two to get an IV infusion of Remicade, and it's taken care of him beautifully. He has very little pain and the arthritic process has been halted in its tracks.I hope you're satisfied with the care you yourself are getting. They have so many promising new treatments either available now or in the pipeline. Do you ever read the magazine Arthritis? I find it informative and upbeat. I'm also getting some real benefit from regular aquatics classes (taught according to Arthritis Foundation standards), even though I've got garden-variety osteoarthritis. There are people with every kind of joint problem in this class, and they don't want to miss it -- it helps with everything from preserving range of motion to improving overall balance.Sorry for all the unsolicited advice. You're probably three jumps ahead of me. For some reason I always have to get my 2 cents in. I just hope you're satisfied with your rheumatologist(s) -- and if not, that you're demanding new doctors.Best,>> I am having trouble connecting to the feisty group on Facebook. Any advice would be appreciated. Also I have recently been diagnosed with rheumatoid arthritis. Anybody else with scoliosis have this auto immune disease? It's frightening because you can get these nodules anywhere in your body. My ribs have been hurting lately and I wonder if there is any connection. The meds I have to take are almost as bad as the disease. I take methotrexate which is a cancer drug and plaquinal which is an anti-malaria medication. Both make me feel sick and I just want to sleep all the time. However, they have taken away most of the joint pain. In reading about RA I was surprised at how if affects your quality of life. I am looking for a support group as I am pretty isolated right now and need to talk with people who are going through the same thing.> > Wonder if this is in any way related to my scoliosis. I think I will send an e-mail to the person in Dr. Bridwell's office who is coordinating this study.Maybe they can learn something from me.> > By the way, my mother was 40 when I was born. I always thought that her age had something to do with all my teenage health problems. No one else in my family has anything like this. > > Take care everyone, Barb>