I would like some advice please, I have suffered from psoriasis since 1982 and from psoriatic arthritis since 1992. I find myself in a desperate situation after being to numerous doctors over the years I now find myself sharing my problems in the hope that someone can help. I have had many health issues but the Doctors don’t seem to want to associate my medical problems. I have back problems in my cervical, breast and lumbar areas.
I have flare ups with my eyes and other areas I have read a lot about these medical conditions and suffer from tinnitus quite badly I would like to sit down with just one Doctor who will take notice of what I have to say. It’s like with the tinnitus the ear nose and throat specialist told me it could be my cervical spine causing the problem and my house doctor agreed I had some more tests done and this backed up their theory but after waiting months the Neurological Doctor said that neck problems did not cause tinnitus and sent me away. Just like the eye Doctor who kept giving me steroids and said it had nothing to do with my psoriasis. When all my finger nails went rotten and dropped out a different doctor diagnosed me with PA in 1992 but since then my problems have got a lot worse especially my back problems Thoracic Outlet Syndrome, I am sure everything I suffer from can be attributed to my PA but no Doctor will listen to me the Neurological Doctor I went to see today did not want to look at my MRI scan he said I had carpel tunnel syndrome in my wrist how did he come to that conclusion I’ll never know. I have seen five different specialists this year and the only one who looked at my MRI scan was the private Doctor who I paid for and he told me I had a slipped disc spinal stenosis and some other problems he advised me not to have any physio and not to see a chiropractor until I had seen a Neuro Doctor but that turned out to be a waste of time. I have just found out that my lower back pain could be caused by the inverse psoriasis which I have suffered from since 1982 “Sacroiliac joint pain as an important element of psoriatic arthritis diagnosis”,
Just need a doctor to join up the dots who knows something about PA
Seems to me that the doctor who will be able to see the connections here is a rheumatologist, preferably one who specialises in PsA.
Something else you could do is get copies of the Oxford Rheumatology Library booklets on PsA. This one is patient orientated and not so up to date on the treatments available but is nevertheless probably the best I’ve ever read:
They are both available as e-books (and other suppliers besides Amazon) but I find it really helpful to have them in hard copy so that I can take them to appointments with me if I want to ask about my symptoms in relation to something I’ve read about. It’s pretty difficult for any doctor to blow-off connections when you’re referring to books written by the leading experts in PsA research and treatment from the Toronto Hospital.
I see you’re in Germany but guess from your user name you’re from Wales originally. The UK has two centres of PsA excellence, one in Leeds and one in Bath. As an EU citizen you’d be able to see the consultants in their private practices. But I’ve also got a couple of ideas I’m going to follow up on to see if I can find any names for you in Germany. I’ll come back on this.
Sometimes the best way to find the specialists leading the field in PsA treatment and research is to look at recently published medical papers and who the authors are and see if there is anyone from your country/area. Hope this one gets you started.
Hello Jules
Thank you for getting in touch I have been to a few rheumatologists the only one of any use was back in 1997 he was able to diagnose me because all my finger nails were pitted and rotten they dropped out eventually I had swollen finger which were painful for about two years but he diagnosed me with PA I had already had psoriasis since 1982. Since then I have visited other Doctors in February this year I saw a young professor in a Hospital here in Germany he was a professor of vertebrae surgery. I spent a good 45 minutes with him and he came to the conclusion that all my aches and pains can be attributed to psoriasis as I have suffered with it for so long he studied the 3 MRI scans that I had with me but advised me to see a rheumatologist. This I did but this doctor once again gave me all of 5 minutes did not look at my scans the diagnosis was unspecified chronic back and neck pain.
So once again I was left speechless
Thank you for your time
Hope you are not suffering too much
Is there any chance you can get back to the UK having booked yourself a private appointment in Bath or Leeds? If you had a dx of PsA from a world recognised expert rheumatologist and a treatment recommendation, would your doctors in Germany take notice and get you started on treatment?
If you think that is an option and want some names/contact details then let me know and I’ll send them by private message.
Diagnosed this year with Osteochondrosis in my neck C4/5 C5/6 C6/7 left, C6/7 slipped disc.
Cervical Stenosis, lost the strength in my left arm numb fingers and thumb in left hand couldn’t look up or raise my head as this made it far worse this lasted for a period of 4 months
It’s now cleared up but not entirely.
Also osteochondrosis in the thoracic area, this has caused me a great deal of trouble for many years neck pain shoulder pain and rib pain.
Problems mainly with my left eye which I’ve had steroids for on more than one occasion the psoriasis cleared up quite a lot I thought it was going to be the end of my problems but that was in 1992 and things got worse.
L3 L5 S1 Slipped disc but I am almost positive that my inverse psoriasis is affecting the sacroiliac joint.
The young professor I saw took the time and said in his opinion it can all be attributed to my PA.
Thank you for your advice I would very much like to speak to a specialist on Psoriatic Arthritis and get a correct diagnosis. I was thinking of visiting Wales in the not too distant future so an appointment in Bath would be ideal. Could you possibly find out some more information for me and once again thank you.