I'm a new member on here who has not been diagnosed with PsA yet

General
1

Hi everyone, I have a long history of a whole range of pain, some severe and some very confusing and also a lot of experience meeting rude arrogant Consultants.

I was diagnosed at 17 with plaque Psoriasis and was covered in it. By 18 I was hospitalised for 3 weeks for treatment and to remove my tonsils as they were a trigger apparently. All was well and most of the psoriasis went, just leaving some small patches on joints. I never had a huge flare up again, only minor and always managable. I guess I accepted it after treatment and considered myself lucky not to be covered.

At the age of 19 I had my first massive bout of pain in my ankles. It was horrendous and very scary. I continued to have these flare ups through my twenties and thirties and forties too but less frequent. I estimate that I probably had an attack about 3 times a year. Typically it would start early hours for some reason and last for hours. Then a repeat would usually follow for about 3 or 4 nights in total.. The pain was like something was attacking my ankles with huge great surges of pain. I had to use the breathing technique that we women know of for during labour.

Once the attack subsided, pain and stiffness would set in and I could hardly walk for about a week. I also used to have extreme fatigue which would wipe me out for a couple of hours and also I used to have these burning pains in my elbows. Nothing was ever diagnosed. One doctore told me that it can't be serious because it didn't hurt on holiday in the sunshine. Another doctor said that we all have aches and pains, so I gave up trying. Fast forward that to about 10 years ago and I had a huge flare up in Spain and shocked my brother how painful it was for me. I haven't had a major flare up since but it keeps rumbling and I recognise it straight away.

For the last 15 years or round about I have had either Disthesia or Parasthesia in both feet every single day. It still shocks me now sometimes that I've never had a proper diagnosis for it. Those two medical words are just on my notes and what neurologists used to say when discussing me.

I am now a healthy 52 year old but I say that because have good blood pressure and pass other tests like that and still make an effort to go to keep fit classes, swim about twice a week and lots of stretches at home including the use of a foam roller.

However, despite tests for MS, RA, neurological damage I have never really been diagnosed with anything. About 3 years ago I had a MRI scan which showed that I have Spondylits in two areas of my back, my neck and lumber area with significant nerve root irritation in L5 and with Bilateral foramina in neck but with no cord compression.

I now have facet joint problems in middle of back according to a spine specialist and has suggested physio. She wasn't at all interested in my old scan report though and rudely put it back in its envelope while telling me how irrelevant it is now. Despits my bottom lower back nearly alway twinging and burning when I sit down. I have to use a cushion or two all the time. It was the spine specialist who suggested that my disthesia (if it is that, it certainly has exact symptoms) was possibly caused by those attacks of pain and those attacks could be Psoriatic Arthrits. Which shocked me because I ruled it out with not having swollen joints, just random painful joints and no pitting in nails.

Wow this is long so apologies. I'm going to my doctor tomorrow to say I want to go back to a Rhumatologist !

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Omg, finally your spine specialist, after all those years of off and on psoriasis and joint pain, etc., etc., etc ., and other doctors not knowing what to call it--this guy finally suggests psoriatic arthritis!

I've had psoriasis since my early 20s. It started out full-blown, like yours, and then let up to only my scalp, knees and elbows. I didn't start having the pitted nails until my early 50s and then came the other aches and pains of PsA and I was diagnosed at 55.

I don't have the blood markers for inflammation, either, but I do have the pitted and lifting fingernails. A smart doctor should know that everybody's PsA doesn't present with every single symptom listed in the textbooks! It you're negative for RA and some other things, why couldn't it be PsA? You obviously have psoriasis.

Your spine specialist is on to something. Maybe you can take his observations to a good rheumatologist. Most general practitioners probably don't know all the different symptoms of PsA.

I'm glad you're doing so well despite all the disappointment with doctors not knowing what the "he-doublehockeysticks" is going on! Good luck to you!

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Hello Linda, all credit to you for keeping yourself so well and continuing to push for a proper diagnosis. As Grandma J says most GP's have never had a patient with PsA and those that are enlightened know little more than the fact it is a rare form of inflammatory arthritis. So as you're in the UK a couple of things leap out at me to mention to you. Firstly is the 'right to choose', which means you can request to be referred to any hospital/consultant who is a specialist in PsA so it is probably worth you doing your homework before you see your GP.

Most hospital websites details who their consultants are by department and you can then use this to look up their professional biographies (often most detailed if they have private clinics somewhere) to see if anyone local to you has PsA as a clinical interest. Alternatively, you don't say where in Wales you are, but be aware that the Royal National Hospital for Rheumatic Diseases in Bath is a centre of excellence generally and have a particularly strong PsA clinic.

You may also want to check out our UK group Cuppa House where I have posted links to all the NICE treatment guidelines for PsA, the BSR guidelines and various other UK specific bits and pieces. It's helpful, or it was for me, to have a clear understanding of the treatment I was entitled to.

I think, though, the most helpful point of reference for me at the same stage as you was a copy of the PsA patient orientated book mentioned in our Book Review section above, it's available from Amazon for under £20 and much less for the Kindle version. There is also a clinicians version published last year which is much more technical and medical .... I have just gifted a copy of this to my very enlightened GP who admits he knows little about PsA but is doing everything he can to support my treatment and care.

Hope this is helpful and I wish you well and all speed to diagosis and getting on the treatment pathway.

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Nana L, you and I are the same age and I too have horrible pain in my feet which is made alot worse by a flare of psoriasis on my soles which has been going on some 11 months now and is only just starting to improve. It's like walking on two razor blades instead of 22!

The biomechanical podiatrist I have seen three times now over the past (nearly) four years, the last time being only just over a week ago, has been worth her weight in gold in terms of footwear advice and orthotics. I need very good arch and heel support but also cushioning beneath my MTP joints. She told me last week about a range of footwear called Vionics which have a built in orthotic as well as selling standard orthotics inserts. I've not been able to get to a shop to try them yet but I will (John Lewis stock them apparently).

Knees and feet. Feet and knees. They are inextricably linked and the podiatrist is lending her support for me to have a surgical review of my knees as she feels they are a major factor in my foot pain.

Wishing you strength for this afternoons appointment. Just shout if there is anything else we can do to help.

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Hi Nana L,

don't know how I missed this post of yours, I've just read it through now. Not sure I've got anything useful to add to the advice you've had so far. Though clearly the main thing is that you see a rheumatologist as soon as possible.

I live on the Welsh border so I may live relatively near to you. I would certainly recommend my rheumy in Hereford and there's another rheumy dept. not too far away that I would not recommend. I'm not quite sure how border hopping works with the NHS, though. Please message me if you want to compare notes.

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There's an article posted by Mod Jules, called 'How to be a pushy patient ...'. You'll find it under 'Featured Discussions' at the top of the discussion page. Might be worth a look. I just copied this little bit from it:

'Choosing a specialist or where to have an op

We all want the best treatment for our condition, but what if you've heard favourable reports about an expert who works in a hospital 300 miles away?

The good news is that you can ask to have your treatment in any hospital or clinic anywhere in the country if it has the necessary expertise. Your GP can help arrange a referral to the specialist you would like to see.'

The reason I'd recommend my rheumy is that he is very good at cutting through the cr*p, which you seem to have encountered quite a lot of.

And there's the Royal National Hospital for Rheumatic Diseases, which Jules recommended & has an excellent reputation. In your shoes I wouldn't be trusting to luck and you really don't have to - you can research a good consultant / hospital and maximise your chances of getting sorted.


Nana L said:

Thanks Sybil I've been told that my referral will be to Glan Clwyd and there is no certainty that the consultant will be experienced with PsA as they are often locums, which doesn't make you feel confident at all
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Omg, Nana,I don't like the mention of a blood test first. Idk what blood test, but if it's one that measures inflammation or some other tests that can identify inflammatory arthritis, there are many of us with psoriasis and PsA who don't have blood markers for the disease or inflammation! Just so you know that so the doctor can't say you don't have PsA if your blood tests are negative! I'm not 100% sure on this, but one of the mods can clarify-it's something like 50% have negative blood tests for the disease.
Best of luck with your rheumy--I hope you get the treatment and meds you've been in need of for a long time!

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Your GP sounds as if he/she is on the ball. I rarely see the same GP twice but have had to go to the practice a fair bit recently and have been very impressed by their working knowledge of PsA.

So glad to hear you're going to aim for the best hospital possible.