Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hello All

Hello!

My name is Dana, I am 23 and from NJ. I am a registered nurse and work in an emergency department. I am currently going through the process of being diagnosed for AS.

As for my looong story (that I'll try my best to keep short ) I have suffered many years with endometriosis, with several flare ups through the years of "arthritis" (no one ever told me what form). Over the past 6 months or so my fatigue has become out of control, I constantly feel like I have had the flu & my low back pain (that I always attributed to endometriosis) has become intolerable. Then about 2 months ago I began to have what I believed was sciatica, but with severe numbness. I mentioned this to one of the physicians I work with who told me it wasn't classic sciatica, but that I needed an MRI anyway. In the days I waited to get an MRI my pain began to flare out of control,and kept popping up in different areas, including my hip, to the point where I could not walk at work & was dragging my leg along. At this point the physician I work with suggested that I be admitted to the hospital as he thought I may be displaying some early signs of MS. I agreed to be admitted and spent 4 days in the hospital - during which I could not walk a majority of the time because my leg just would work properly. As I spent all this time in bed my low back and hips became so incredibly stiff I could not even describe it. Well, I ended up going through the work up for MS in the hospital, and when they found nothing I was told by a neurologist that this was "all in (my) head". No one however could explain to me why I still could not walk, and I was sent home with pain meds and a walker.

Thank God that one of the doctors who admitted me to the hosptial was a friend of mine & decided to follow my case once I was discharged. As I followed up with him, he began to notice that I was running a fever every time I went to the office. He started me on doxycycline, believing that I may have lyme's disease. When I finished the 2 week course of abx and still had a fever, and had now developed peripheral joint pains along with my back and hip pain, he referred my to an infectious disease specialist. That doctor told me he believed I had RA and then referred me to the rheumatologist (finally!).

The rheumy was great on my first visit, and did about 16 blood tests, sent me home on celebrex (which did nothing but cause me to break out in hives), and recommended a bone scan.

The next time I saw him he informed me that "interestingly enough", my HLA B27 test came back positive, and that my bone scan showed inflammation in the shoulders, cervical, thoracic and lumbar spine, the hips, si joints, wrists, fingers, ankles, knees and feet. It was only after these tests that I felt he really took me seriously. My meds were switched to mobic and he also ordered enbrel. My insurance company has refused to pay for enbrel, but as luck would have it, I just got married and my husband's insurance supposedly will cover the medication. Imagine that - I care for sick people all day and my insurance won't cover the med I need!

ahhh - sorry this post is so long. It just feels so good to get my whole story out to people who understand. I am so sick of being in pain, feeling sick and having no one understand why I just don't feel better "yet". I actually had a security guard at work ask me why I walk like I "just fell out of a tree"...nice huh?

ok...well, I'll stop babbling now. I promise I'm not always this long winded. I hope to get to know all of you.

Thanks for your time,
Dana

Dear Dana

Welcome to KickAs !! You'll find a lot of support and useful medical information here. You are certainly not the only person who's been told it's all in your head (IAIYH).
Some people have only been diagnosed after years when the Xray results show massive bone fusion going on.

Take a good wander around the site and read up on the various options people have been trying out. Its not a one size fits all kind of illness, so what works for one person, might not suit another. A lot of people have been very successful with diet modifications (see Low Starch/No starch section). But definitely exercise is a good thing to keep your mobility.

There's also a Women's Forum in case you have questions you'd hesitate to ask in mixed company. (ask one of the Admins to be put on).

There's lots of people here from all over the world, all sorts of occupations, so you can ask anything you want about anything, and there'll be some one to offer some advice.

Welcome home Blue Northern

My new rhuemy told me during my appt last week, after he asked how long it took me to diagnos, that it takes women on average 8 years to get the correct diagnosis....I was shocked, I thought two years was bad.

I guess I was lucky?!?!?!?

Amy:)

Welcome to KAS!

You will find we all have similar stories about diagnosis and doctors!

Anyway, just wanted to say hello.

Amy:)

Gidday Dana
Welcome to this site...bad that you have to meet all these extra special people by having AS ... but truelly wonderful that you have found this site.
that is somewhat ironic about caring for sick and having a knock back on the enbrel Are you on it yet and if so is it helping you?Me ...am waiting and hoping for something better next rheumy visit.It takes so long to get to see a specialist near where I live.Hopefully the enbrel will make you feel brand new. and stop those ''what are ya walking like that for '' comments...mmmm yep I hate that also.welcome again and take care,jude2

Diana, welcome to KA!

Your story is so familiar to many of us here. I should have been diagnosed in 1991/92, when I was in full AS flare (including 18 months of iritis). I am HLA-B27+, but they didn't test for that routinely back then and since I had no damage showing on my xrays, I wasn't diagnosed. Until 2001, when I was in the midst of what I now realize was a 5 year flare. This time they tested for B27, as there was definite damage showing on my xray, and it took less than two months for me to be diagnosed. Ten years too late, to my mind, but I have to think that I handled it better now than I would have back then.

I hope you can get on one of the biologics. Many of us have had wonderful results with them. And please do check out the diet forum. Again, many folk here have had good results with eliminating or lowering their starch intake.

Look forward to talking more.

Hugs,

Hi Dana,

Isn't that lovely? It's all in your head! That's just their pat answer when they are too lazy or stupid to figure out what's wrong. Thank goodness you had a friend nearby.

I walk like I just fell out of a tree too, although I like to think I do it with grace. People can be so insensitive!

Welcome! Peace, Tam

Hi, I am twice your age and I just wanted to say don't believe "them" when they say that you'll only get worse...I only walk like I fell out of a tree when I have fallen out of a tree....the rest of the time I walk like I got bucked off once too often
Wear boots and you can pass for equestrian injured and be stylish at the same time.

I also have gone thru the let's do all these test for MS cow fertilizer test routines and my God, they are always so disapointed, they want you to have it sooooo bad. I would advise you if you by any chance already cross eyed for another reason to now just have the offending eye removed and replaced with a prothesis that just sits there in neutral, if you think you are not strong enough to go thru that routine again or just say "no". The second your eye wanders you can see their faces lighting up because here is something they have seen on Television, d**** you Montell. There are a lot of cross symptoms but we have the DRY eyes and they have the MOIST ones.

2 years ago I had an iffy Brain MRI but refused to go on with the lumbar puncture routine (again) because I don't like it. I have read enough on the MS support sites that I think the alternative dietary approach some of them use dovetails with what I am doing already. While some people would want peace of mind of a final diagnosis, bear in mind that if you are Canadian, British, Aussie, Dutch, Spanish, Asian, Indian, or New Zealander or Inuit we in this country are totally screwed if diagnosed with something chronic at certain points in our live, in terms of medical and disability insurance and employment. Which brings me to another point, we have a world wide audience here and we need to remind ourselves that if someone misunderstood us it may be because we've left off mentioning what country we are writing from in our post.

Another word you might hear on your journey is the word..."fibromyalgia". You have 2 choices when you hear this, you may either run screaming from the examination room or you may smack the doctor across the fingers with a medical textbook. Being in the medical profession already, you are probably familiar with the definition of fibro...let me translate that into amerikhan doctorese for you ..."fibro": "I have no idea which sort of anti depressant this woman needs but let's write the script and get her the heck out of this office, fast."

You are fortunate in a way your blood test came back positive. Being a negative can be fun because you get to harass all the people who say you can't have the disease because you are a neg. I'm sorry you will be missing this exciting activity, esp. the Revealing Evidence on the X-rays, which really could be a Law and Order episode. And So, Your Honor, I wish to submit the Evidence that will convict, er, set my client free...

Check out the diet forum. Sometimes we refer to it as the Dark Side, I have crossed over today, and will shortly be driven back by sunset by a few people throwing stale biscuits at me and waving sheaves of unthreshed grain and I will chuck a cabbage or two back at them before retreating.

And again, welcome to the site!

Hi Windrider!!!

I'm glad you crossed over this daylight hour. That gave me a real belly laugh- THAT- I can always use.

Peace, Tam

Hi Dana,.. and Welcome to KA!

I've read somewhere that endometriosis is an auto-immune disorder, as is AS. Sorry to hear you've been diagnosed with AS too but glad to hear the Rheumy was able to figure out what's going on. It's a tough time when you don't even know what you're dealing with, though there's a lot of reading in here that may be useful as well as a friendly group who can appreaciate what you're going through.

Really glad to read you have the option to access Enbrel; I'm on Remicade (a similar medication) and it's given me my life back.

Take care,
mig