Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group "Looks like MS"

oh man you don't half get hit hard....life would appear to be a struggle for you and your family in your part of the world...i won't go on about your new DX. i will leave that for folk that know you better and are therefore better equipped to say some kind words of comfort to you

your little girl is lovely.she reminds me of the little girls typical of Scotland...,vibrant cheeks,cute smile and lashings of red or blonde hair

thinking of you today

with such a lovely family to be there for, you should have no shortage of motivation

take care John

I'm so sorry

Tommy

Lisa - it's been . . fifteen months THIS time around. So I know, that sounds like a short amount of time . . . but when your spouse can't work EITHER, and then Gpal.com STOLE $1100 from us in August, you know . . . and I don't want to abandon Allsup, they've been very good to me, but then I meet this woman who CLAIMS she has Fibro and depression, (which is entirely possible but I got the feeling she was massively exaggerating, and those are both ailments very easy to fake) and she got SSDI in 9 months because she got a LAWYER, and now she's got a new Mustang, an entirely new kitchen with granite and glass-topped stoves and she's got a cocaine habit! When you meet someone like THAT, (oh and she told me she's actually working 50 hours a week under the table! How cute) then you want that dang lawyer's phone number, you know? Allsup told me that NM's average is 13 months after the date when you ASK for a hearing. So for me that was . . december I think. So yeah . . . next January, maybe.

Cindy - I'll PM about bracelets etc. So you had 3 docs convinced of MS and then one clear MRI and they GAVE UP?! MS is famous for showing false negatives on MRIs. My sister went 6 years without a dx because of that. She had like 4 false-neg MRIs. God, why are the "rules" of diagnosis so effing stupid? For MS it's like, you have to have two separate MRIs showing lesions at least 6 months apart from each other. According to SSA, for AS you have to have your neck fused at a 45 or more degree angle . . . ARGH! And then my friend Meg had one episode, one mri, got a "perfect" MS diagnosis from the MRI, it took less than a month. SO frustrating!

Steve - You flippin rule. i'm so proud of your marathonning! (Yes, that is now a word, because I said so.) And that's the thing about MS, it's SO individual, moreso than AS, even. Different people have different symptoms, can do different things.

John - that is a FANTASTIC! compliment to my little Bailey, thank you! I had been hoping she'd get the redhead gene, (I always get along with redheads, for some reason) two of my sisters are redheads, and Cody's family is Scottish/American Indian, his beard is red, but I think it would have been just TOO MUCH for the world to handle, if she'd turned out to be a curly-headed, adorable, effervescent, Scorpio AND a redhead! lol She's already wayy too pushy . . . if I described her in one word, it would be "Unstoppable." I'm trying to work on things like sharing, and not beating up your cousin, etc . . . She's so strong, i'm so glad she's got this personality. If she comes down with any illnesses, SHE will win. That's one reason we picked the name "Bailey," it means jail or fortress or impenetrable place (but of course, the little "name meaning" poster her grandpa got her says it means flowery meadow . . .lol) and I've always felt that my name helps me. "Bridget" means "resolute strength," and I love that. It's helped me change my attitude several times, when it really mattered. So, knowing that Bailey may end up with autoimmune disorders someday, I insisted she get a strong name, instead of one that just means "pretty girl" or something wussy like that.

Not much to say except that I'm thinking about you.

I'm being tested for MS too but I think in my case it isn't MS just AS causing more drama.

You have a great attitude about all of this. Kudos. I'd be falling apart as usual.

we have a belief in Scotland that anyone with red hair usually has a temper to match the hair colour,and you know something? it's usually true

Hey, Barngoddess! May I congratulate you on your MS diagnosis? That sounds kinda strange to say that, doesn't it? But I do understand when you finally receive a diagnosis, you are so happy!

I agree, MS is one slippery illness to diagnose. When I saw the doctor earlier this year before my surgery, I discovered that diagnosis had been dropped from my file. Reason? No collaborating 'evidence' of it other than white matter lesions which could be caused by a lot of other illnesses. At the rate they are finding them in me, it shouldn't be too long to figure out why!

Yes, there are a lot of treatments for MS now. Even a pill! How lucky!!!!

I had to wait 15 months for the MRI appointment and then another further 15 months to see the neurologist. During that time I convinced myself I had pretty much any other illness because, like you, I got tired of hearing stories from others of how so and so had MS and was ok for 35 years, etc.

I saw first hand how others suffered with it and experienced the side effects myself from the needles to 'help' with it. Blah!

You have such a sunny personality! Always keep smiling, ok? We all love you!

Aaaaaaaw Bridget - personally I think it sucks to get ANY diagnosis of a chronic illness, but remember what Wendy always says:

"Life is 10% what happens to you, and 90% what you do about it!"

ATTITUDE is EVERYTHING when dealing with any of this cr@p - and from what I have seen, you are full of that(!) so I know you will find the best path through all this...

Thanks for sharing this and keep us posted. You have an awesome attitude and I totally understand how knowing what you are dealing with is better than being in the dark.
I'll be interested to read others' responses regarding your lawyer question. I have the feeling that getting legal advocacy will help a great deal.
Hugs,

You are a force, your spirit and attitude is amazing, and your daughter is lucky to have such an awesome momma to look up to.
I don't like hearing that your family is having financial struggles on top of all the other stuff. I wish you the best, and am glad you are embracing your diagnosis head-on!
you rock, Bridget!

Hi Bridge

Just wanted to say I am thinking of you and your family. I think you have the right attitude. I understand why you would be happy. It is hard to fight an enemy that you can't even name. Treatments and medications have come a long way for MS. I have 2 friends with MS and they are doing well and their future is not predetermined. I think you kinda feel the same way I did when I was diagnosed with AS the second time. I said "good now something can be done to help me". I felt that the doors for treatment had opened up.

You are a warrior