Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Introducing "me"

I am new here and would like to introduce myself.It has been a long journey that got me to this destination.Since 03
I have been shuffled between....... neurologists,neurosurgeons,spine specialists,orthopedic DRs,
a pain management clinic,outpatient services at a M.S clinic for 3 yrs...and then finally a rheumatologist.

At different times during this course I have been told I had a small stroke.Possible ALS,M.S and then "possible M.S",a brain tumor,perhaps lupus...that I needed a triple disk fusion of my neck and lower spine...etc....
What a nightmare!

I have had spinal taps,a myleogram,tons of Mri's,X-rays and massive bloodwork.I have tried so many meds I have lost count.

Then the rheumy...Thank God...
Finally answers came.Fibromyalgia...AS...sleep apnea arthritis of my knees etc...
It all isn't much joy, but what a relief to have a reason for all this...to have a concrete answer.
I am so glad to have found this board.I just started Enbrel a week ago.restless

restless,

Alot of us have a torrid time getting diagnosed, and all I can say is a bit of inflammation can do alot of funny things to you.

I hope the enbrel does the trick, there are other meds in the same area and usually one of them remicade, enbrel, humira does the trick.

Dave

it looks like there are a lot of us newbies here.
welcome,
hopefully we can figure this all out together,
with the help of those who have been here for awhile.

sue

Welcome Restless,
You're virtually around the bend from the Charleston area here. I believe one of the most important parts of AS therapies is a 1st class Rheummy!
We'll all be here anytime, maybe more compassionate and supportive than our actual relatives some/many times.
Have a good night! Later.
Russ

hey restless,

Welcome to KickAS, I hope you look and find a lot of helpful information about AS. AS brings many extra diseases along with it as you have already found out. We try to answer most any question you may have from experiences others here have gone through on their journey through the maze. It appears you have found one of the god rheumies who had dealt with AS before.

It sounds like the doctors out you through the mill more than once in such a short period of time. Having had four myleograms myself I know those are not a party anyone would enjoy attending. My two main diagnosis are AS and degenerative disc disease which it sounds like you may have a taste of also. I was diagnosed over 20 years ago, but went through a battery of test about four years ago matching a lot of the ones you went through.

Myleograms are usually given after an mri before the doctors plan to do surgery. I did not see if you ended up having surgery or not. I hope whatever meds the doctors have you on now are giving you some relief.

Once again welcome,
Brent

Hi and welcome!
Your ordeal sounds familiar to mine and many others I have read about here over the years.
It's never nice to find out you have something wrong, but we understand how nice it is to finally have a name for what's wrong, especially since you've known for a long time that whatever was wrong wasn't going away until someone gave it a name so you could find some kind of help for it.
You've definitely found a place filled understanding and support, not to mention the hundreds of years of knowledge...if you put us all together.
Hopefully you will like it here and after being here a little while you will be able to change your name to restfull.
Nice to meet you!
Hugs,
Lisa

Welcome! Glad you found us and are here. Just sorry you have the need. This is a great place full of love, support and knowledge. We will be looking forward to getting better acquainted and sharing all of that back and forth with you.

This is my lifeline.

Come back often.

Blessings.
Possi

(((Sue 22))) I don't think I have welcomed you. I am so glad you are here too. Everything I said above certainly goes to you to. I am looking forward to getting acquainted, learning from you and sharing anything I can.

Come back often.

Blessings.
Possi

hi possi,

that's ok, i didn't really enter this site in the conventional way, "hi, my name is, and here is my story", i just kind of dove right in, in my slightly (ok, more than slightly) obsessive way...but when you spend 10 years in the dark and finally see the light (and fortunately at a time that you're feeling pretty well), well the whole thing is pretty exciting? overwhelming? delightful? scary? a whole bag of mixed emotions...maybe gratitude is the biggest emotion right now...greatful that i found a group with "100s of years of experience combined".

thanks for the welcome,

sue

It doesn't matter how you entered, I am just glad you are here and looking forward to a long friendship. This is the the best forum on the web. The people are absolutely wonderful. Everyone is so supportive and eager to encourage and share with each other the good and the bad, the things we learn to help each other and funny things in our life. We just share our lives.

I am so glad you are here. I have been here a few years. Forgotten exactly how many but it has been one of the biggest blessings of my life.

AS isn't my worst problem at the moment but this is where I get my support. My worst at the moment is my RA/Lupus. I am needing a thumb replacement, knee replacement, two hip replacements and have pinched nerve roots at L4 and L5 besides the arthritis all over me and the AS up and down my spine. On top of that I just found that I have a partial blockage in an artery. They are trying to figure out what to do with me. I have good drs. and it will all be ok. I leave my life to God. I have a scripture that I hold on to....Jer. 29:11 that I think of every day. There are others but that is mine....that God has a plan for me; for good and not for evil, to give me peace and a hope. Depending on your version, more or less paraphrased.

Be talking to you. PM whenever you want to.

Have a good one.

Blessings.
Possi