A posting from Sweden

[Zrinski]

Hi to you all...
I´m sorry to use english as my german is very,very limited. I hope some of you will understand me anyway.
I´m a 36 yr old guy living in Sweden. Since I was about 18-20 yrs old I have had a bad back, a pain that started very, very low in the spine. I have also had from time to time pains that are very much alike Ischias going down to the left big toe (don´t know the proper english word for this toe but hope you will understand;o))
I have also had avery intense pain from time to time so to say "under the heel".(Hope THAT one will make sense to you)
3 years ago I started to experience intense, extremely intense chestpains and pains higher up my spine corrolating to the pains in my chest. I also started to experience extreme pains in my left hipbone, a pain that went from the hip and down the leg. The pain is sometimes so intense that it wakes me up at night. Now I am also experiencing pain from my right hipbone sometimes. It hurt so much sometimes that it gets hard for me to get up from bed.

Some eight months ago or so the pain in my spine had moved up to my neck and also to my throat. I think the pain in my throat is located at the cartiladge surrounding my "speaking organ" so to say (don´t know neither the german or english word for this).
The cartiladge forming the adams apple. The pain to my throat is so intense now that it radiates out to my face and down my chest.

For 3 years now, I have been to all kinds of doctors, to try and find out what is wrong with me. One of the doctors suggested Bechterew but ruled it out because I lack the B-27 in my blood.
I have had my spine x-rayed and there are formings of extra cartiladge (brosk in swedish) between my dishes and also extra formation of cartiladge in my left hip.

I must ask you here at the forum two things: If you evaluate what I have written about my symptoms, what do you think??
I myself think it sounds very much like Bechterew despite the fact that I lack B 27.

Secondly what is worrying me most today is the pain in my throat. Have any of you experienced anything like that??
Or is that not something to connect with Bechterew?

Once again excuse me for my english and also for the lenghty posting. (If someone writes back you may use easy german as I understand a bit.)

Peter Zrinski

[Ulmka]

Hallo Peter,

your symptoms (above all the extra cartilage) are very much alike Bechterew-symptoms and you needn't be HLA-B27-positive. In Germany, there are about 5 % of Bechterew-patients that are negative for this antigen.
An important question is whether your pain gets better when you get some exercise? If so, that's another point for Bechterew.
I have never heard about pain in the throat correlating to Bechterew - but it shall not be said, it can't be. The pain maybe radiates from your cervical vertebra.

If the pain gets better when you move, you should at any rate try to do some exercising every day to remain movable. Besides you can take a non-steroidical anti-inflammatory medicine like Diclofenac or Indometacin. Did you try this medicine already?

I hope I could help you a little bit - and you understand my english;)

Lydia

[Zrinski]

Thank you very much for the swift answer...and you english is excellent (as far as i can see as I´m really swedishspeaking myself)
Well....the curious thing about it all, speaking about the chest-pain, is that if i do intense, very, very hard work like sawing or chopping wood it gets worse after some hours or half a day or so. Then in the course of a week or so it gets better...but the pain is always there, more or less.
When it comes to the pain in my back and hip it gets better when I move around normally. If I sit for a long time (like now in front of the comp) the pain in my back gets almost unbearable.
I always have an almost reflexlike urge to stretch as that apparantly makes me feel better.

About the throat: The cartiladge forming the right side of my adams apple is swollen, like there has been extra cartiladge or something formed...and there is the exact location of the pain in the throat. It hurts extra when I swallow. And always feel like a have a lump in my throat, the right side. This really worries me as the pain is very unpleasant.

I must add that I also have psoriasis and since one and a half month Tinnitus (I suspect that this tinnitus has something to do with my neckpain)



Zrinski

[Zrinski]

And by the way..i have not tried any medicins as the doctors here are in the dark of what I am suffering of :o(


Zrinski

[Ulmka]

Hallo Peter,

I would try Diclofenac as soon as possible to get rid of the pain. In Germany, you can get it without prescription at any pharmacy.

Since you have psoriasis additionally, it sounds even more like Bechterew.

My Doctor had arranged a MRT (Magnetic resonance tomography) of my spinal column for me. Performed with a contrast medium it shows very clearly an inflammation of the joints in your hip and your back and above all, your throat - and whether there is already some extra bone that shouldn't be there. It should be possible to get a MRT in Sweden too - though it's quite expensive. A bit cheaper but not so good is a computer tomography (CT). It should also be eradicated that there is any neoplasy in your throat - which could also be seen in CT or MRT.

I wish you a painless night!

Lydia

[Zrinski]

There is one more thing...that has made me confused. When one speak of Bechterew one always says that there is additional bone in your spine and so on. But in my case there is additional cartiladge. Or have I misunderstood?
Also I have to ask you about neoplasy..I´m not quite aware of that word but has it something to do with cancer? (About my problems in the throat believe me, I have been nervous of that option)
And about inflammations: The doctors I´ve seen have taken bloodsamples and somehow with that help ruled out any inflammations. But I begin to wonder if that is really possible to do that.
One doctor I asked if it is possible to see cartiladge in a CT but she said no. But now I´m beginning to wonder if that is true.

Believe me, I have gotten some really strange answers from the doctors I have visited! I have to fight it all the way. The positive thing is..that I don´t have to worry about costs for x-rays and so on. It´s almost free.. the hard thing is to get doctors to perform them.

Thanks once more for taking time to answer my questions Lydia. I seem to get more answers and suggestions from you than any doctor here in Sweden :o)


Peter Zrinski

[Engelbert]

Hallo Peter

There is one Tipp for you, lock at kichas.org (http://kickas.org) thats a forum in the USA from People with Bechterew ( Spondylitis Ankylosans ).

i Hope i can give you a little help with this Tipp, for a great answer, my english is to bad.

Your Engelbert

[petra]

Hi Peter,

Welcome to our thread.

I think as Lydia, primary You should clear about the kind of the swelling near Your larynx.
It is very important to decide, what a kind of swelling is there, could be a inflammatory one or a neoplasy one and this kind should be treated as soon as is possible to do.:confused: .

To clear about the SPA can wait for a short time and we don't go away from here
;)

Best regards - petra

[Zrinski]

Thanks for the link and also for taking time to care about my problems Engelbert, Lydia and Petra.
The hard thing for me right now is that I after so many years of pain still hasn´t gotten any clear answers.
Once I get answers I can start working to minimize the pain and learn to live with it.


Zrinski

[Ulmka]

Hallo Peter,

At first I want to answer your questions:
- it may be, that there is additional cartilage for the beginning, later on - as the inflammation 'works' - it may turn into bone

- with neoplasy, I meant any sort of tumour - benign or malignant, with the latter meaning cancer, but that needn't be so

- in blood samples, you can make sure, that there is an inflammation, if C-reactive protein and sedimentation of the blood are high, but if they are normal, you can't say, that there isn't any inflammation. In my case these factors were high when I had a very bad period of Bechterew, but now the pain in my back is much better (thanks to NSAR) and my feet and my knee are still painfully inflammated - and these factors are almost normal.

- I think, it's possible to see - or to believe, you see it - cartilage in a CT. I just checked some CT-films I've got here at home (it's a series of my head) and I could clearly see my eyeballs, which definitely aren't made of bone, but of some soft material. I also could see the interior of my nose, which, as far as I know, is built of cartilage.
You can definitely see cartilage on a MRT (you can even detect muscle-strands on a MRT)

Now, I have something new for you: I learned today, that there are very rare cases of Bechterew, in which the syndesmophytes (= the extra bone) grow not along the spinal column (as a 'bamboo stick') but they grow horizontally, e.g. into the throat. There was such a case at the german Rheuma-clinic at Bad Aibling and this man is said to be operated there. So perhaps you could find some information at this clinic.

Good luck in finding the doctors to perform the right examinations!

Lydias