First Youtube Video

[Billydude]

Thanks for that link Nancy.  Now you've helped me too.   I have heavy spondylitis and see now that it in itself can be the cause of my fatique along with many other things too.
Steve

[kindandcaring]

Nancy Bless You !   

Thanks for that AS link and watching the Vid

Im just back from my Rheummy..she also thinks ALL my symptoms are HLA-B27+ related.

Her reasoning for saying its NOT Sjogren's is....ESR and CRP are not elevated
Does that sound correct....is EVERYONES ESR, CRP Elevated here ?
Maybe I should ask this with a new thread.

And she has confirmed I have AS as well as associated spondylopathies..so thats 2 Docs for HLA-B27+ versus 1 Ophthal for Sjogrens diagnosis.

I still think there is more to it..though I'm sure she is very right about the AS . it just does not explain the Liver and the Dryness and skin colour changes.

She wants me on NSAID's thats all there is to offer she says.

Fatigue yeah Steve, Nancy..it is unexplainable to others..we can but remember what it was like without it...Fatigue that does not improve with rest is the pits..!
Im really struggling to type this tonight..its a rough deal.

Steve...'AS' as well....bugger my friend..its a bugger for sure...are you HLA-B27+ apologies if you already said.
What do they give you for the AS ?

Thanks again Nancy
And My bestest wishes and thoughts back at yer
Ron

[pudmott]

Hey Ron,
My ESR was never elevated even in a flare. It only elevated in July when i had a bacterial sinus infection. My CRP is usually a bit elevated but not much. The normal is <3 mine usually sits at 4ish. The thing is Non elevated ESR and CRP dosen't rule out Sjogren's or anything else for that matter. Bloods are not the be all and end all of the picture. They are only part of it.

I think it might be time to explore the other options my friend. NSAIDS are not the only answer. Also if she is so against you having sjogren's because your inflammatory markers are not raised, why is she want you to go on anti inflammatories if you supposedly have no inflammation?

Just thought i'd throw that out there for you.

Good luck my friend

Pud

[kindandcaring]

Hi Pud

Well Interesting isnt it..personally Ive not ruled Sjogrens out..and if anybody asks me I will say I have a Sjogrens type illness.

Yep Bloods are not everything..but it's interesting to know what others results are..it's what can be amazing that this forum can provide us all ..information that even Doctors in a lifetime of clinical practice may never see in one go.

I find myself 'almost' defending her diagnosis..its hard to make one as the symptoms are so similar..and the bloods are the only difference she sees that would make her feel able to make the call...its not easy...clearly we need better diagnostic tools for all the Autoimmune Diseases as not one glove fits all..and a lot of these AI's do not have any tests to prove otherwise..and when we have mixed up disease mothers like me...LOL it makes the run o mill Doc run for cover ..just in case you might ask him whats wrong with you ...

Thanks for your reply...will follow up with that call  A fresh assessment I think might make a difference.


All my Best
Ron

[pudmott]

Yes we are strange little specimens we are. Just think how boring ones life and a docs career would be without these little challenges. Especially those of us who are not quite clear cut.

I personally like to go against the norm wherever i ccan. I gives one a sense of purpose and a challenge. One can create havoc and then sit back and watch the flow on effect. Wicked i know but someones gotta do it.

take care

pud

[Sandra]

I don't know about the CRP thing but my ESR is elevated to about three times the norm when I'm feeling bad. The tests that made my rhuemy suspect for sjs was that I am AnitSM and AntiRO positive, then finally after that the biopsy. That's here in Canada anyway. Keep learning and researching and asking but make sure you take some long holidays for life to shine through and you will get there.
thanks again,
Sue, I think we should start a Topic headline called Discriptive One Liners...I love what you said "how can I be this tired and not die" I thought it was so funny, sometimes when dealing with this laughing at my pathetic self is all that gets me through 

[Sjenny]

Dear Sandra:

I'm glad I said something that made you laugh, that makes my day!

I am presently taking low dose alpha interferon tablets for dry mouth and they seem to be working - I am much more comfortable!  Of course, that could be from another unknown reason but right now I am crediting the tablets.  They are available in Canada with a prescription from Mr. Don McTaggart, phone and fax 905-332-4492.

The tablets were not approved by the US FDA because the researchers showed an increase in saliva with the alpha-interferon tablets and the control tablets both.  Dr. Gene Watson was one of the researchers and he mentioned to me that when the interferon tablets dissolve and are swallowed, the chemical is destroyed by stomach acid. 

I decided to dissolve the tablets UNDER my tongue to try to bypass stomach/liver issues and I think it might just be working.

Sue

[kindandcaring]

Guys

Thanks for posting

Those alpha tablets sounds like a good find Sue..I followed them and realised that they had failed the trial...perhaps your conscious  sublingual effort is helping the efficacy of the lozenges.

Sandra Im on a BIG holiday in a few weeks Cheers so Im listening to you already..cheers

Pud
Im booked in ..earliest Feb 09...no problem thanks again for the info.

All me best
Ron

[pudmott]

Feb 09!!!!!!!!!!!!!!!!!!!!!!!

Holy cow. He must be getting popular. Well at least you're in and Feb is nice in Newcastle. Nice sea breezes

Pud

[kindandcaring]

Thanks Pud

Yeah its not toooo long away..

options is what this whole thing is about the more we have the better we are off. especially when the glove don't fit right.

Will see you then !...sure is nice to walk up ..nobby's fresh air n all.

All me best
Ron

[pudmott]

yeah no BHP smells now


Pud

[kindandcaring]

PUD

Yeah !