Just saying Hello and giving a quick update :)

Landgull36uk

Hello all.

Just saying hello and just letting you know that i havn't forgotten about you, its just taking sometime for the official results to come through but i have had a call from my rheumy. She tested me for RA and spondylitis it seems im clear from them but she didn't say much about the X-rays as far as i can remember so im waiting for a letter to come though about my results. I asked my local GP for a print out of what she sent to him by letter from my last visit and it just explained about what she diagnosed me as having. Its turns out its not just Scoloiosis but something called Kyphoscoliosis and she thinks i have something degenerative in nature. This could be anything so shes sending me for a MRI in a few weeks time, im sure that will be fun I'll post the Official results in this thread as a reply when i finaly get them, might get them in the next week or 2 hopefully

Take Care peeps

stickywicket

I think - but don't take my very uninformed word for this - that kyphoscoliosis means two bends rather than one. 'Hileena' has it but isn't on here much these days. You could try PMing her. I don't know what causes it but I don't think it's autoimmune related.

dreamdaisy

Life itself is degenerative in nature, it's called the ageing process. I guess you are still in the stages of having things ruled out rather than in which must be frustrating but I think it's something with which many of us on here are familiar. Kyphoscoliosis is where the spine curves in two directions, how that is treated I do not know. I hope you have a pleasant Easter. DD

hileena111

Hi
Yes I have kyphoscoliosis. How does it affect you? I'm just achy or sore across my shoulders and my back [it varies]
I'm treated with painkillers/dullers. Paracetmol would you believe and naproxen. I lead a pretty normal life eg I drive, I go to everything I used to.
Hope its not too painful for you, maybe I'm one of the lucky ones. I know when it was first diagnosed every time I passed a shop window or mirror and saw a reflection I shuddered when I saw my shape.
The doc told me not to let that upset me and that everyone had something wrong?? His suggestion was go to our local shopping centre, sit at a window and watch people going by. I did and almost everyone had something even if it was only a slight limp. As he asked......would I have noticed if I hadnt been looking for something??? It was the same with other people.....they weren't likely to notice me unless they were really looking for something :roll:

Love
Hileena

Landgull36uk

Hello.

StickyWicket and DreamDaisy you are both wright about the kyphoscoliosis. It is rather annoying having to wait so long especialy with me being in alot of discomfort Not much i can do though but wait.

Thanks.

Landgull36uk

hileena111 wrote:

Hi
Yes I have kyphoscoliosis. How does it affect you? I'm just achy or sore across my shoulders and my back [it varies]
I'm treated with painkillers/dullers. Paracetmol would you believe and naproxen. I lead a pretty normal life eg I drive, I go to everything I used to.
Hope its not too painful for you, maybe I'm one of the lucky ones. I know when it was first diagnosed every time I passed a shop window or mirror and saw a reflection I shuddered when I saw my shape.
The doc told me not to let that upset me and that everyone had something wrong?? His suggestion was go to our local shopping centre, sit at a window and watch people going by. I did and almost everyone had something even if it was only a slight limp. As he asked......would I have noticed if I hadnt been looking for something??? It was the same with other people.....they weren't likely to notice me unless they were really looking for something :roll:

Love
Hileena

Hello hileena111.

I currently have pain in my left lower back and hip, also at the top of my back and left shoulder which is winged (winged scapula). I also can get a crack feeling in my lower back and sometimes at the top of my neck. Im on strong painkillers which i now have to take daily (Co-codamol 30/500 mg). Some days i feel like a walking lump of wreckage but there are some odd days where i feel ok. Im not sleeping much at night through discomfort because it wakes me up and im currently having temazapam to help me sleep at night sometimes. Its taken me a while to type this because i am tired as in sleepy. So by the sounds of it you are one of the lucky ones and im pleased you are Sorry it been a while to reply to other comments its been a crazy few weeks, my mum isn't to well and ive been worried. I should hope fully be expecting a letter off the hospital in the next week or 2.

Thanks for your reply

Landgull36uk

Just a quick question while im here. I went to see my GP about changing my Co-codamol for some strong anti-imflamatories. Apparently he said to me that being as i am on Omeprazole that i could not take strong anti-inflamatories because of the risk of a stomach bleed and he put that down on my records when i was there. Has anyone else here heard of that? The reason why im asking this is because i dont fully trust my doctor that i sore, now i only see him because at the moment hes the only one i can see.

Thanks.

stickywicket

Omep is often prescribed for people on anti-imflamms because the latter are notorious stomach-wreckers. I don't know why you were prescribed it if you're not on them but my own stomach was damaged years ago by anti-ifllamms and I still have to take omep although it's years aince I was told I must never have anti'inflamms again. I think, if you've had stomach problems, you won't be allowed them as a bleed can be very dangerous. Maybe different pain meds might help?

dreamdaisy

In my experience of anti-inflammatories they have never done anything to relieve pain but that's probably because of my joint damage: when your bones are rubbing together nothing will ease that. :roll: They did, however, ease inflammation but no more than that, I guess with an inflammatory auto-immune like mine the potential for swelling is always there when not on the big gun meds.

Discomfort is our way of life, it will not go, it will not ease, all we can do is remove the sharper edges of it with pain relief with, combined with an anti-inflamm if possible. I know that diclofenac is no longer easily come by as it raises the risk of heart attacks but everyone's situation is different. When I was on anti-inflamms I still had the co-cos, it wasn't an either / or. With all my meds that has never been an option. DD

Landgull36uk

Hello.

Looks like me and Co-co are going to be best friends for a while, ok thanks for the replies

Thanks.

dreamdaisy

You're welcome, we understand the various frustrations our conditions present and have tried different ways to make things better. I have cocos in varying strengths and have been taking them for over fifteen years. I remember when I began humira my rheumatologist telling me that I would be able to drop the crutches and stop the pain relief.

She lied.

DD

Landgull36uk

Hello all.

Ive got an update. Ive recieved a letter off the hospital explaining that i have a MRI scan on the 19th April my birthday of all days which is about wright. Unfortunately though they havn't given me any imformation about my Xray and blood test results which i requested but i think it will be discussed the day i have my MRI scan.

Thanks.

stickywicket

It might not be. If your appointment is simply for a scan that's probably what you"ll get. Interpretations and consultations usually come later. I hope the result is a Happy Birthday!

Landgull36uk

stickywicket wrote:

It might not be. If your appointment is simply for a scan that's probably what you"ll get. Interpretations and consultations usually come later. I hope the result is a Happy Birthday!

Thank You, Stickywicket

dreamdaisy

Happy birthday, I hope you enjoy your day. DD

Landgull36uk

Hello all.

Sorry its taken soooo long to update you but to keep a long story short ive had my MRI results through. Sometime back i had a skin complaint Psoriasis after a while it seemed to clear up, so we thought. Its now moved into my spine and because of that they now think that i may have arthritis in my spine which i think could turn out to be this if im correct and if i do have arthritis there: Psoriatic arthritis. Anyway i will be getting a letter through at some point soon explaining in more detail wbout it and will get a appointment to see yet another specialist.

Sorry its been so long and i hope all of you are coping well with your painfull problems, i must admit im feeling pretty dreadfull today

Anyway i'll hopefully be posting again sooner rather than later :!:

Landgull36uk

Landgull36uk wrote:

Hello all.

Sorry its taken soooo long to update you but to keep a long story short ive had my MRI results through. Sometime back i had a skin complaint Psoriasis after a while it seemed to clear up, so we thought. Its now moved into my spine and because of that they now think that i may have arthritis in my spine which i think could turn out to be this if im correct and if i do have arthritis there: Psoriatic arthritis. Anyway i will be getting a letter through at some point soon explaining in more detail wbout it and will get a appointment to see yet another specialist.

Sorry its been so long and i hope all of you are coping well with your painfull problems, i must admit im feeling pretty dreadfull today

Anyway i'll hopefully be posting again sooner rather than later :!:

Oh yes i will probrably have to go for another MRI scan aswell, so you never know i might know the final verdict by christmas

stickywicket

Thanks for the update

I don't think you can get psoriasis in the spine but both psoriatic arthritis and ankylosing spondylitis (which does affect the spine) are sero-negative forms of auto-immune arthritis. I think anyone who has had psoriasis is more likely than others to contract psoriatic arthritis or, indeed, any other auto-immune form of arthritis.

The good news is that it doesn't matter much which you have as the meds are the same.

Thanks for the update. As for the 'feeling dreadful today', it might be the humidity. It gets to me and mine is only RA. I say 'only' because it's something to do with humidity in the atmosphere stretching tendons and ligaments which are more susceptible to PsA than to RA.

Landgull36uk

stickywicket wrote:

Thanks for the update

I don't think you can get psoriasis in the spine but both psoriatic arthritis and ankylosing spondylitis (which does affect the spine) are sero-negative forms of auto-immune arthritis. I think anyone who has had psoriasis is more likely than others to contract psoriatic arthritis or, indeed, any other auto-immune form of arthritis.

The good news is that it doesn't matter much which you have as the meds are the same.

Thanks for the update. As for the 'feeling dreadful today', it might be the humidity. It gets to me and mine is only RA. I say 'only' because it's something to do with humidity in the atmosphere stretching tendons and ligaments which are more susceptible to PsA than to RA.

I had a letter through from the hospital yesterday and it did state that "that there were signs of arthritis related to the psoriasis in your spine" which is basicly what you mentioned above (psoriatic arthritis or ankylosing spondylitis). I have to admit i found that a bit strange myself when they said i had psoriasis in my spine
Also yes the humidity is getting to me because my skin feels oily and uncomfortable plus im experiencing more pain my lower back, left hip, left knee and now my left foot. Ive already taken 4 30mg Cocos this morning, anyway all will be come clear when i see the specialist. I just hope i dont have to have another MRI scan done or that will mean another 5 to 6 week wait, we'll see anyway

dreamdaisy

I suspect that's a badly-worded letter: what they were trying to say was that the spinal arthritis may be related to the psoriasis. As you know psoriasis is due to skin renewing itself too quickly, that's a process which usually takes between 28-31 days but with psoriasis it happens within three or four hence the raised plaques. Needless to say it's an over-active immune system which is the culprit.

I have PsA but not much of the P which is a blessing. It causes different damage compared to RA as it affects the entheses, the parts where muscles and tendons are joined to bones. I don't know if can affect the spine, it prefers the smaller joints of the body so maybe it can. DD

Landgull36uk

dreamdaisy wrote:

I suspect that's a badly-worded letter: what they were trying to say was that the spinal arthritis may be related to the psoriasis. As you know psoriasis is due to skin renewing itself too quickly, that's a process which usually takes between 28-31 days but with psoriasis it happens within three or four hence the raised plaques. Needless to say it's an over-active immune system which is the culprit.

I have PsA but not much of the P which is a blessing. It causes different damage compared to RA as it affects the entheses, the parts where muscles and tendons are joined to bones. I don't know if can affect the spine, it prefers the smaller joints of the body so maybe it can. DD

Hopefully it will all come clear when i next see the specialist, thanks for the reply. Hope you and stickywicket are ok

stickywicket

Thanks for asking I was doing fine until I tried the 'gin, rum and whisky' cure recommended in your song