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#467404 - 04/15/12 08:02 AM Re: Un-diagnosed but suspect I have AS [Re: Geo]
ValsMum Offline
Senior_AS_Kicker

Registered: 07/05/10
Posts: 941
Molly, that sounds awful about getting dressed. I had a hard time when my shoulder was frozen, it was the worst.

Sue, muscle spasms sound like no fun.
_________________________
Rheumatoid Arthritis

I feel better with the NSD for my lower back pain and The Gerson Therapy has really helped my joint pain/RA.
www.gerson.org

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#467408 - 04/15/12 08:39 AM Re: Un-diagnosed but suspect I have AS [Re: Geo]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 8601
Loc: Brittany, France (since Nov 08...
Ha. Shoulders. Had a 'hemi' replacement (Copeland). Strewth. Bit of a botched job, sigh. That was another bout of real fun. Could not raise L.arm for nine months, not even to prune the roses - now pruning roses is definitely hard labour, yes? (tongue-in-cheek <LOL>) More difficulty getting dressed and undressed. UNable to drive car, and so on and so forth. Nine months of hell then, a further op to put his stupidities to rights, then got a shoulder infection in the hospital. Bah! (Could even now put that blasted orthopod in the stocks and throw rotten tomatoes at him).

Yep. Shoulders can be miserable. Nay, are sheer misery when they go wrong.

Take care -
_________________________
MollyC1i - Riding OutAS

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#467417 - 04/15/12 10:36 AM Re: Un-diagnosed but suspect I have AS [Re: Geo]
pspondylitis Offline
Journeyman_AS_Kicker

Registered: 03/18/12
Posts: 101
Diagnosis of AS and other autoimmune conditions is difficult. The MRI might help see sacro iliatis. In many ways, the exact diagnosis is not important. The first step is to see if you have mechanical or inflammatory back pain.
_________________________
Most likely psoriatic spondylitis. HLA - .

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#467425 - 04/15/12 11:20 AM Re: Un-diagnosed but suspect I have AS [Re: Geo]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 8601
Loc: Brittany, France (since Nov 08...
And, pspondylitis, to 'detect' inflammatory back pain, you...?

According to the medical information/papers one starts with the throacic back, looks for inflammation and for Romanus lesions and proceed from there. IF no back inflammation, no Romanus lesions (Romanus is typical 'for' AS) then look for mechanical problems unless suspect DISH, in which case X-Rays. As for the SIs SI problems are considered to show up later in the disease - and won't show up on X-ray until fairly well/well established anyways.

It 'is' possible to have/find AS and DISH in the same patient. *Very rare though. Summat like six cases DDx so far, that is definitive DDx, most well known being in the Netherlands, where was found at atopsy (can check out in relevant journals). Though there are so called 'eminent' rheumies who would deny any possibility of this being a case, but check further, beyond that person's poorly concluded beliefs, and will find their stance way off base.

But back to 'backs'. Nuclear bone scan? Yes. Good and reliable scan that, though the 'nuclear' bit can be painful, as they 'usually' put in the furthest part of the body, i.e. the foot - hurts like hell. As for the resultant radiation? (Hmmmmm For 'me' MRI and NO radiation - though a stink to lie prone in that infernal machine. About time ALL hospitals had the FONAR UPright MRI). Thermoscan - excellent. Will show up the hot spots. The Min (Bath) uses a thermo scan as well as all the other diagnostic machinery. Thermo is very useful. But at the end of the day, MRI Saggital STIR tau1, tau2, fat supression with LOTS of slices, bingo. Got the inflammation, seen what the spine is doing and...got any possibility of DISH into the bargain. At the end of the day - a bargain.

Interesting. And your choice, recommendation would be...?

_________________________
MollyC1i - Riding OutAS

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#467426 - 04/15/12 11:38 AM Re: Un-diagnosed but suspect I have AS [Re: Geo]
cemc Offline
Platinum_AS_Kicker

Registered: 01/25/10
Posts: 1646
Loc: UK
Am I right in reading your "consultant" isn't actually a rheumatologist? If so, then definitely insist on a rheumatology referral pronto. No other type of consultant should be trying to diagnose it.

Agree with Molly totally about the MRIs - really do have to check that they have ordered appropriate ones otherwise you could well get another "normal" result when it shouldn't be. Also, if you have any kind of upper back or neck pain try and insist on them looking at your whole spine straight off, instead of having to go back again and argue your case if the SI joints don't show anything yet.

Do you have any kind of family history of spinal arthritis, or autoimmune disorders or AS or Rheumatoid arthritis, etc? Might be good to ask around now, and draw up a bit of a chart for your rheumatologist. The presence of a strong family history goes a long way to getting inflammatory back disorders taken seriously.

Co-codamol isn't going to do anything for inflammation. Is there any reason you can't take NSAIDs? If not, then ask your GP to prescribe full therapeutic doses of one of them for you (Ibuprofen, naproxyn, etc). If you respond within 24-48 hours thats another sign that it is likely to be inflammatory.

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#467431 - 04/15/12 12:44 PM Re: Un-diagnosed but suspect I have AS [Re: ValsMum]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19037
Loc: Upstate NY
Originally Posted By: ValsMum


When those of you that have AS say you have to rollout of bed is it becasue you are so stiff you cannot bend your back to get out of bed?

I have RA and cannot go down the stairs in the morning very well, and I must have at least 2 showers a day to loosen things up. I have never had to rollout of bed and Iwas wondering what it is like . Is it stiffness and pain to move the back? I know I can't use my right wrist in the morning to turn the shower faucet on, so I am figuring it is something like my wrist, you just don't want to use it or move it.
I have horrible low back pain and it is hot to touch,but I have never had any trouble getting out of bed. I'm just trying to understand AS better.


and on a day like today, when not in a flare, and actually been doing pretty well between the flares, back / ribs are just too stiff and sore to be able to move any other way.

but like you, i hobble to the bathroom (PF is such that the first few steps are like walking on shards of glass) and get in the nice warm water. that seems to loosen things up. then as i move around, things loosen up further.

for the longest time, i wondered if i had inflammatory arthritis because they always talk of inflammatory arthritis as causing it to take a long time to loosen up in the morning. whereas i can wiggle my feet and hands, stretch, take a shower, and already, i'll be a lot less stiff and sore. i'd say though that the mid thoracic back / ribs take a bit longer.

but i have undiff spondy, so my experiences may be different from those with an AS dx.
_________________________


sue

USpA
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
pred taper for flares
occasional naproxen / Aleve
chiro
walk
no dairy (casein sensitivity), limited eggs
future: humira, soon I hope

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#467457 - 04/15/12 02:41 PM Re: Un-diagnosed but suspect I have AS [Re: cemc]
Geo Offline
New_Member

Registered: 04/14/12
Posts: 8
Loc: Wales (United Kingdom)
Dear all,

Thanks a lot for your words and help - definately working my way through the links and other sections of the forum!

Cemc,

My consultant is not a rheumatologist - he is very senior but I think from searches he is a microbiologist - so will take this up with him when I see him! I have finally got an emergency appointment for Tuesday and I am not leaving there without a diagnosis, pain relief or a referral......if he is adamant its not AS and there is nothing physically wrong then I want to see a psychiatrist......this pain has to be coming from somewhere!

I will be taking a few printouts with me to help discuss things with him......or at least help show I'm not just making things up smile

As to NSAID's I have previously had tramadol and that worked, had naproxen before that but it messed my tummy up so the GP switched to the tramadol......but they won't prescribe me anything without my consultants say so - so I have had no pain relief that is worth taking for 7 weeks now........

I really want to thank you all as your help has gotten me through the day! I don't
Know any of you really yet - but just your moral support has helped so much I have to thank you.....I was literally crying at 4am today in so much pain - but your words helped wash away the helpless feeling I had.....so again thanks!

Wishing you well,

Geo.

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#467479 - 04/15/12 05:24 PM Re: Un-diagnosed but suspect I have AS [Re: Geo]
Michelle70605 Offline
Addicted_to_AS_Kickin

Registered: 11/14/07
Posts: 6213
Loc: Louisiana
Hi Geo...no, you're not crazy, not by any stretch... smile I'm so glad that you found us when you did, this is by far the best place you canm be right now, as you are seeking answers, knowledge and it sounds like you could use some support... rainbow Welcome to KA!!! Hang in there and we're here if you need us... hugss
_________________________
Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF

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#467480 - 04/15/12 05:39 PM Re: Un-diagnosed but suspect I have AS [Re: Geo]
SJLC Offline
Iron_AS_Kicker

Registered: 02/16/10
Posts: 1046
Loc: CA, USA
Originally Posted By: Geo
if he is adamant its not AS and there is nothing physically wrong then I want to see a psychiatrist......this pain has to be coming from somewhere!


Do NOT let them pawn you off on a psychiatrist who will try to tell you its all in your head!! Just ask fellow member Gilth where that road leads!

(That's different from seeing a psychiatrist about stress from coping with chronic illness)

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#467573 - 04/17/12 04:16 AM Re: Un-diagnosed but suspect I have AS [Re: Geo]
Geo Offline
New_Member

Registered: 04/14/12
Posts: 8
Loc: Wales (United Kingdom)
Well today is my meeting with the consultant - so hopefully I can get some answers smile

Hopefully it will go better than my appointment last night with the GP - who were called by my consultant and told they have to give me pain relief.....

The woman was somewhat rude - implying that all my results are "normal" so there is nothing wrong......

When asked about my blood results she said my ESR was a little raised but of no concern and she could not give me any specific Ig tesults - but I was broadly where it should be - so she said I have not got AS or any signs of the likes of crohns - so I must have just lifted something wrong and hurt my back.......despite it lasting for several years!

Anyway - lets see what I can get from the consultant!

I need some sort of answer - as work are not impressed with me taking the odd sick day without any indication a to why!

Wishing you a pain free day,

Geo.

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