Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Just checking in...

Hey everyone!!
I don't post on here very often but I do keep having a look every now and again!!
I'm waiting to see my Rheumy to discuss my MRI results (there was inflammation in lower back)...so we'll see what happens. NZ docs were convinced it's AS but I do get a strong impression my UK docs don't agree.
Nearly all the symptoms ring true to me (apart from problems with eye and neck. I am fortunate not to experience any symptoms in these areas).
It's a waiting game right now.

Anyway enough about me...I'm posting here to see how you are all getting on!!!

What's the latest??

Love Moo Moo xxx

Hi There,

It didn't get iritis until after having A/S for twenty years, and I have neve rhad neck pain. I am grateful not to have the neck pain , and now that I am 50 I hope I have been spared that part of the spine.


Janet

Great to hear from you Miss Moo! Let us know how it goes. Seems like many doctors have a limited view of the whole spondy spectrum...like, it has to be raging full blown classic AS before they'll get close to providing that diagnosis.
How's the whole working situation right now?
Me...I'm looking forward to summer. I could use some fun and relaxation. It has been a tough (school) year but I have many blessings to count.
Just came by to say hi and nice to see you here!

in hind sight, i can't believe for a dozen years that no rheumy dx'ed inflammatory arthritis. its so obvious to me now. so here to say, important to not give up, eventually we get it all figured out.

i was fighting a flare the last few weeks. it finally went to my SI joint in a big way on sunday. so started a pred taper yesterday. magic happy pills is all i can say! and when i did this back in early march, the effects lasted 2-3 months before needing another dose of it. so taking advantage of the week to be productive as possible.

Nice to hear from you guys sorry to hear about the flare

Work is a big problem for me at the moment...doing the odd day as a nursery nurse atmy local school, just cover but I'm in considerable pain after doing a couple of hours. Trying to apply for Employment and Support Allowance..waiting for the claim to go through. Haven't applied for DLA with me not having much back up from the docs.

Typically my dream job at the school I'm at has popped up. I've been desperate to work there properly and permenantly for the last 4 years so I'm pretty upset about not bring able to apply for it sod's law ey!!!
It's obviously not meant to be.

We'll all keep plodding on the best ways we can!!

Xxx

Hayley, good to see you here again. Don't let the docs fob you off. If they are hedging around giving you a diagnosis, make them tell you why it isn't AS, or why you can't have a diagnosis of undiff spondy at the very least. Ask them to explain why it could be that the doctors in NZ were sure it was AS,when they aren't.

As for DLA - I think it could well be easier to get than ESA at the moment. You don't need a diagnosis for DLA - just physical difficulties coping. In the "diagnosis" section just list key symptoms. Sometimes a diagnosis can cause more difficulties because the decision makers go by that rather than what you actually tell them about your disability levels. BUT - don't try and fill in the form on your own. Its one form that you really must have someone who understands the decision making process to help you with, otherwise you can pretty much guarantee you will be turned down first time. Its far too easy for you to just put in one or two words that get interpreted as meaning you don't have disability. Best places to get help are people that deal regularly with DLA and have access to the "decision makers guide for DLA"- the CAB disability welfare person, or sometimes local disability advocacy groups. When you do get the DLA form filled in, take a copy, summarise the key points and go take the summary to your GP and your rheumatologist so they know what you are dealing with on a day to day basis. That way you are more likely to have them singing from the same hymn sheet when DLA asks them for a report. Otherwise docs tend not to know what it is we actually have difficulty with or how the disorder affects our lives.

Thank you for your advice!!! My friend was turned down first time and said the majority of people do nowadays but have no problem when they appeal.

Don't worry I'll be asking all those questions to my specialist in July! I could tell by the letter I recieved that the MRI showed inflammation and she was just going to leave it at that. "we'll see if there is anything else we need to do". All very vague!

Xxx