Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What can I expect from...

Another thing that I never dreamed could be related to AS was my heels. Another Dr who probably did not have a clue! But, that is over. All 3 of my kids have plantar faciitis. I pray that they never get AS. All 3 of mine are boys and I watch them! The oldest is 21 and has Crohns. The other 2 are 17 yr old identical tiwns and one of them has Juvenile Diabetes. So we struggle here. But it coulc be worse.

Thanks!

Diana

Hi Diana,
Just wanted to welcome you to our site. It's great place as I am sure you are finding out already.
I hear what your saying about docs not being very understanding. Although, I have to say I have some pretty good doctors working for me. They care and understand more than most, but just aren't doing as much as I think they could be.
Like it was said already, they just get lost as to what to do sometimes and just hope that the next doc will know.
Don't know if you read all the forums yet, but there is one set up for a book I am writing concerning AS and all of us who deal with it, and I am looking for info from everyone and their stories. Please feel free to check it out and add your input...how AS has effected you and your life.
Take care and again welcome.
Lisa

Hi Diane..

Welcome to KickAS. My name is Denise and I am from Georgia, too... Athens!!! (Home of the awesome GA DAWGS!!!! woof woof woof)...

I have only been a member here for a few months now.. I have had symptoms for approximately 20 years but have just recently been diagnosed with spondyloarthropathies. I have cervical stenosis, degenerative disc disease (several thoracic discs are completely gone), herniated disc at C5/C6, kyphosis with limited mobility in neck, some indicated fusing in thoracic area, painful hips and SIs, lots of inflammation of tendons at insertion points in knees and shoulders, plantar faciitis, on top of having Diabetes II. My family history is full of autoimmune diseases--(chron's, Lupus, diabetes and one first cousin has been dx'd with AS and Lupus).. My rheumatologist is holding off with DX of AS until later on. I am in the midst of trying to get a MRI which should help with DX, but insurance is balking about paying for it.. I am currently taking Vioxx and Skelaxin. I still work 40 hours a week as an accountant and as you know, some days are better than others. I have had to cut back activities and slow down my pace. All the things I used to do were "good".. but now I limit my time for only the "best", especially playing with my 7 month old grandson.. :)

Anyway.. friends here are always quick to give good advice, a shoulder to lean on, and a good laugh every now and then.. It's great to have another Georgia "peach" join us..

Love, Peace and Joy
Denise



I

Oh my goodness! I am in Snellville and a BIG DAWG fan too! I have a niece there now and she works PT at the Taco Mac. One of my twins hopes to go there in a year.

Sound like you could be my twin! I too have had the DX of kyphosis. Actually most of my pain is in the nck and shoulder and thoracic area. The hips stay under control as long as I am medicated! TOday my Dr recommended gastric bypass since I am getting heavier due to the immobility. WIll have to really think about it. I have put the weight on in the last 3 years!

Who is your Rheumy?? I am not pleased at all with mine. My GP is trying hard to learn about the disease. So I feel I am learning more here than at his office!



Diana

Hi Diana..

I actually live in a small town east of Athens.. but work at the University.. How 'bout them Dawgs????

Currently I am seeing Dr. Elliot in Lawrenceville. There isn't a good rheumy in Athens. I am very pleased with her.. The only thing I don't like is the long wait every time I go.. sometimes 2-3 hours...eekk! I always take a good book, but usually end up making friends with everyone in the waiting room.. After being there so long, you get to know them all on a personal basis..LOL!. . I have an appt. at the end of this month...

Our stories do sound similar... Coming to this site has been a real eye-opener. I knew something was seriously going wrong with my body for quite awhile before getting a diagnosis. The past two years have been the worst. This past spring I started really having problems walking.. being extremely fatigued, chest pains and being short of breath.. I, too, have gained alot of wait due to diabetes and lack of exercise. Anyway... I ended up going to the hospital due to these symptoms.. they thought it was my heart. but after having a total workup including catherization... they found my heart was in excellent health... so why the chest pains???? Of course I got the IAIYH treatment... anxiety...stress..depression...blah..blah... but I knew it was more than that... I had been having these "roving" pains for a long time, but really never thought about it all being part of a bigger picture... Anyway I started reseaching on my own... first I thought it must be pleurisy or something causing the pain when I breathe.. so I got on path of searching about Lupus and other autoimmune diseases... I found out my cousin was positive for the HbLA antigen and had recently been dx'd with AS.. so then it all started falling into place.. When my GP suggested going to a rheumy (my sed rate was 49)... I decided to see Dr. Elliot, who also treats my cousin... After examining me thoroughly, she said she thought I probably have AS, but definitely some spondyloarthropathy..

I have learned so much from KickAS and all the folks here.. it was so wonderful to know that there was a definite reason to all this pain and stiffness and it has a name..

Anyway.. sorry this is long..but we all have so much in common.. It's great to have someone who understands the daily struggles.

Take care..

denise

Denise

So nice to hear from you again. I have actually had an appt a few yrs ago with Elliott but I had heard the horror stories about the wait that I cancelled. And now she takes no new patients. For a while I saw a great Dr at Emory but it was so far. SO now I am with a Dr at Dekalb Hospital. None of them thrilled me. I am very stiff in the thoracic area, very limited mobility in my hips, and my neck is the worst. I can barely stand it every day. Sleeping is the pits! I would love to find the drug that would just put me out for 8 hours!

Talk to you soon!

Diana

My girlfriend once gave me a massage with an oil that contained lavender oil - and I slept like a baby. Ever since then whenever I use a bit od Lavender oil I always sleep well.

"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy