Ankylosing spondylitis

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Ankylosing spondylitis

Postby *Lisa* » Fri Sep 19, 2014 8:34 pm

I did say to my fellow mods I wouldn't stress :tongueout: :blowkiss: but Mr Anxiety is still lurking :scream-1: and thought I may have some relief from it all on here with some info... maybe :facepalm:

Any one out there have AS?

Im on the brink of a possible diagnoses. Not seeing consultant for confirmation until end of December (I don't do waiting im awful and have no patients) :waiting:
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Re: Ankylosing spondylitis

Postby TNK* » Fri Sep 19, 2014 9:22 pm

Sorry I cant help with your questions, but am keeping my fingers crossed for the answers you are looking for x
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Re: Ankylosing spondylitis

Postby Theresa34 » Fri Sep 19, 2014 10:15 pm

One of my rheumatologists thought I had this. I was sent for an mri which came back clear x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Ankylosing spondylitis

Postby *Lisa* » Fri Sep 19, 2014 10:37 pm

Thanks

Theresa34 wrote:One of my rheumatologists thought I had this. I was sent for an mri which came back clear x


Did you also have an x/ray & an examination of many tests?
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Re: Ankylosing spondylitis

Postby Theresa34 » Fri Sep 19, 2014 10:41 pm

No. I had an mri for my pelvis, whole spine and neck. I've had back pain for years, before full blown fibro came on.
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Ankylosing spondylitis

Postby *Lisa* » Sun Sep 21, 2014 7:51 pm

In my appointment i had many examinations to check my posture & spine (which I have a curve) my flexibility (almost none lol) and measured how far I can turn my head left then right and measured how far away from the wall my head was as I couldn't stand up against a wall :shock: and many more. The tape measure was coming out many times :lol: actually it was nice to be given a full M.O.T by a consultant as never had anyone check me thoroughly.

On top of that the usual history, bloods (have slight inflammation) x/ray of the scarolatic joint and then been told to expect an MRI of the whole spine if he cannot see what he wants to see :yikes: :yikes: which again I refused :nono: so he will refer to an open scanner.
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Re: Ankylosing spondylitis

Postby Theresa34 » Sun Sep 21, 2014 9:05 pm

I hated the mri. I'm extremely claustrophobic :shock:
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Re: Ankylosing spondylitis

Postby carolad » Mon Sep 22, 2014 11:39 am

*Lisa* wrote: actually it was nice to be given a full M.O.T by a consultant as never had anyone check me thoroughly.

.


Isn't it amazing how many doctors think they know what is wrong with you without actually examining you?!

I had one idiot doctor who, when I told him I had scoliosis, just glanced at me (I still had my winter coat on) and said 'no, you don't'. He then wrote 'no evidence of scoliosis' in my notes and referred me to physio for back pain caused by bad posture. The physio examined me on the first appointment and said 'I see you have scoliosis...did the doctor not even examine you?' :shock:

And this is why I have no faith in doctors...I don't know if they are just stupid, incompetent or uncaring...possibly a mixture of all three! If you are lucky enough to find a good one...don't let him/her go :)
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Re: Ankylosing spondylitis

Postby *Lisa* » Mon Sep 22, 2014 12:47 pm

This has been my major problem over the 15 years from onset of symptoms

In the beginning it started with neck stiffness and pain. This was treated over and over by physio in many years. Then the physio contacted my GP saying that more investigations were needed. I was sent to a rheumatologist (saw one of his registrars)

My physio happen to mention fibro and they took this on board without any examinations or x/rays etc for any thing else and FM was diagnosed.

Along the years I always thought I was either mis diagnosed (like most of us) or something else was rearing its head.

I saw (paid for) a few rheumatologists even the professor davies. All said I hadn't got many tender points but the stiffness was the main factor in the diagnoses (again no x/ray etc just points pressed)

Then my inflammation levels played up (CRP) then I keep on getting muscle strains in neck/back which would floor me for up to 6 weeks each time.

Nothing was said just given muscle relaxants

I then complained of weakness in my leg and sciatica pain. To rule out a trapped nerve I was given an MRI of lumbar spine. This detected a curve in my spine (loss of lumbar lordosis) some degenerative disk disease and prolapse disks. Again nothing was said just told to get on with it.

Kept on saying the stiffness is the main debilitation and that paying for physio was the only way to keep me mobile.

Was only cause the DLA chopped my care rate and the GP said on the notes there was no confirmation of chronic fatigue syndrome that I kicked up a fuss and so I was refered to a rheumatologist for confirmation of CFS (which he did)

Not long after the consultant re called me back telling me he thought there was something more about me and the raised CRP was an indicator that there was...

I saw the main man and today I received a letter which he sent on to my GP it says (cut back)

Arthralgia (pain in joints)
Elevated CRP
Family history of AS
PRESUMED FIBROMYALGIA SYNDROME!!!! :shock: :shock: :shock: :shock:

It then tells my history...

Examination :

Reduced lumbar spine distraction with a modified schober's of 2.5cm :?: :crazy: :crazy: :crazy:
reduction of cervical spine rotation and marginal reduction of lateral flexion :?: :crazy: :crazy: :crazy: :crazy:
Extended tragus - to - wall distance of 16.5 com (cannot stand back against a wall) :crazy: :crazy:

Then he finishes with...

It is possible that Lisa does have an inflammatory spondyloarthritis and he believes that further investigations would be appropriate (had an x/ray also) He says I may also need MRI of whole spine if x/ray doesn't detect what hes looking for...

Now this tells me I may have been mis diagnosed :yikes: :yikes: :yikes:

Had fibro diagnosed now for nearly 10 years :yikes: :yikes: :yikes:

I wont know exactly for sure the whole outcome until I see him next and if an MRI is not needed. I shall also confront him about FM and do I actually have this also??? but as above in the letter is looks like he thinks not :shock: :shock: :shock:
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Re: Ankylosing spondylitis

Postby Pete » Mon Sep 22, 2014 7:19 pm

lisa
reading though what you have wrote and what the doctors thoughts are if i was a doctor i would be thinking of sending you for a nuclear bone scan because it could possibily show or give doctors a better understanding of what is going on more than a MRI could?

and as i have said before to you i had a scan done in brighton in year 2000 and it showed hot spots in my upper and lower back and Sacroiliac joint so this could be a option for you if there is a scanner in your area and i think it might be worth asking the doctor about this scan

Also the scanner is fully open so you will feel better about it :-)
see link.

http://www.patient.co.uk/health/bone-scan
Pete :-)
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Re: Ankylosing spondylitis

Postby carolad » Tue Sep 23, 2014 10:58 am

Lisa, I think your experience shows that the medical profession really hasn't a clue about a lot of conditions! I think in many cases, they just give you a diagnosis to shut you up and get rid of you, they really don't know what is the cause. I don't believe western medicine has all the answers.

I have gone through something similar...to this day, I don't know if it is my scoliosis causing my pain, or fibromyalgia. Or whether I even have fibro at all. My GP told me that because my pain is in back/hips/neck/shoulder that it is spine related to he thinks 70% of my pain is scoliosis related. But he is only guessing...the truth is no-one knows.

And after years of wanting to know definitively what was the cause of my pain and fatigue...I have now come to the conclusion that it really makes no difference. Whatever I have (or don't have), I have physical symptoms. And I just have to find a way to manage these symptoms as best I can. It does make it a bit difficult to explain to other people what is 'wrong' with me though....which is why I generally don't explain!
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Re: Ankylosing spondylitis

Postby *Lisa* » Tue Sep 23, 2014 11:59 am

Thanks Pete I shall have a look and maybe chat with consultant about the test if they don't grant me an open scanner.

Carolad,

My daughter has been diagnosed FM now if these tests are positive then she will need to be re-tested as AS can be hereditary and she has similar symptoms to me like the stiffness being the fore-front. If this comes about then she needs a whole knew medication regime as shes not on the right meds for it.

AS if not treated in the right way can lead to a lot of problems and can cause complete fusion and rigidity of the spine. This means diagnoses is very important.

AS in many is not detected for many years as its like piecing the puzzle together like many other conditions.

Can the physio write to your GP with there findings? this can then lead on to an x/ray?
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Re: Ankylosing spondylitis

Postby carolad » Tue Sep 23, 2014 7:27 pm

*Lisa* wrote:Thanks Pete I shall have a look and maybe chat with consultant about the test if they don't grant me an open scanner.

Carolad,

My daughter has been diagnosed FM now if these tests are positive then she will need to be re-tested as AS can be hereditary and she has similar symptoms to me like the stiffness being the fore-front. If this comes about then she needs a whole knew medication regime as shes not on the right meds for it.

AS if not treated in the right way can lead to a lot of problems and can cause complete fusion and rigidity of the spine. This means diagnoses is very important.

AS in many is not detected for many years as its like piecing the puzzle together like many other conditions.

Can the physio write to your GP with there findings? this can then lead on to an x/ray?


Ah, I hadn't realised there was a specific treatment plan for AS. Your situation is quite different then, I can see how you would need an accurate diagnosis. If you do have it, that is absolutely shocking if it hasn't been picked up before!

My situation isn't like that - I've had X-rays and scoliosis has been confirmed. But there is no specific treatment for it, other than pain relief. So I was prescribed Tramadol and Amitriptyline about 6 years ago for scoliosis related back pain...and I know these are common drugs for fibro too. So in my case, it really makes no difference what is the cause of my symptoms :)

I hope you get some answers soon x
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