Back on the meths - Do it yourself style

I saw a locum consultant last week, my brilliant Arthritis one having returned to the country of his birth and a research post. Damn, I knew he was good. Seven months after my last appointment I had my 'early' review, with a stand in doctor at a different hospital 40 miles from home. Such a nice man I had been told, a real gentleman. Well he did stand up when I entered the room and he shook my hand but.... what a load of old cobblers.

He announced he was a retired consultant from Scotland, helping out, before asking me why I was there. I haven't had time to read your notes much. He certainly hadn't read the 5 page later the last chap wrote and had copied to me with his 'plan of action' regarding tests and treatment.

It's not worth the bother of relating much about this poor consultation for consultation read diatribe for the doctor about why I should lose weight. He gave me a cursory examination, apparently could find no evidence of psoriasis or indeed anything much and suggested he do a raft of the same tests the previous chap had ordered in December, just to check. Carry on taking the tablets. I asked about my skin problems, "I can't see any," he said from 6 feet away, "we'd have to refer you to a skin person,"

"For Psoriasis? That's why I am here, "

"Well I don't do skin."

I glumly asked him how long before I could get any treatment, "Well we could put you on a trial but I don't think it's worth it."

Not worth it when I have been like this for 9 months and am getting worse by the week. I burst into tears and sat back. Something about his God like manner and the demeaning way in which he spoke to me made me give up in an instant. I just wanted to be out of that room and I was angry that after being told last year and even having had it confirmed in writing that in the opinion of the last consultant no-one was looking at the whole picture and from the evidence he had found in my notes I had had psoriasis ignored since 1966 no less, yet again I was going away demoralised and with no hope of relief.

Thankfully I had taken WH with me. Usually I go to ALL his appointments, he rarely attends mine. WH began to get annoyed and questioned why I needed to go through the whole lot again after the last round when a treatment had been proposed but no one had wanted to prescribe it after the previous bloke left. "I am not he, was the reply I need to do these things for myself." WH asked him if he would be here in a month's time to review the results then. Er..... NO. He was only a stand in. WH told him the effect of the PA on me (and him) said I could lose weight if I could actually move a bit after all I had lost 40 pounds on my Lyme treatment. The eyebrows raised and he visibly shifted in his seat. I know that disbelieving look. WH told him every time I did lose weight I was put back on medication whose chief side effect is weight gain. I was fighting a losing battle. Why could I not start the original proposed treatment for a trial period and see if it helped. Eventually the chap agreed, I think mainly to get rid of an increasingly irate WH and a tearful me. Then he couldn't get us out of the room fast enough albeit clutching a note to the GP to prescribe and a note for a blood test.

I duly started methotrexate again on Saturday. I was not given the treatment card I had to carry last time and there was no mention of the weekly or fortnightly blood test I was supposed to be getting to monitor my liver. I made an appointment for myself and another to see my GP, the earliest of which was 20th July. Today I realise that the instructions on the bottle of pills are different from what he had written on the GP note and had told me verbally. I will have to check with the pharmacy (whilst I also checked the dose of WH's meds which he suddenly discovered is double the usual strength, but that's a whole other story.)

I had a follow up appointment in the post on Saturday; this time another new doctor but at the same distant hospital in 3 months time. That looks like a good start anyway. Yesterday I felt a burning sensation on my scalp which was driving me nuts. I asked WH to investigate, after all you can't see the top of your own head. 2 seconds later he announced massive psoriasis spots all over. Funny that, 3 days before there was no sign whatsoever when the locum looked. He did shake my hand again when I left, what a gentleman.

Back to reality

Our holiday seems a lifetime away, almost 3 weeks since we returned now. This last weekend we were away in Southampton and visited the Hillier Gardens at Romsey. So many trees and so little energy to walk round them all. I did get a few photos of some of the stranger ones though.

Tomorrow I see my new (yet again) consultant. The lovely chap I saw in December has apparently left and I'm seeing a locum once again. I just hope he decides to go with the other chaps plan of action or else I'll be having another boat load of tests again. I just want to start some proper treatment, after all I've been waiting 7 months over which time I have put on weight after the steroid trial, have begun to seize up and and now can't walk very well. Additionally the excruciating skin itch is back with a vengeance. What started as a minor irritation when I was bitten on holiday has developed into a large red, raised patch on my arm which itches intensely. It wakes me up it's so bad. Surely a sign of galloping psoriasis if ever I saw one. Fingers crossed that matey tomorrow agrees and finally does something about it. Nothing I have tried works at all. I can't believe that last year I was so well (and so thin - for me anyway) and now I am almost back to square one, just the Lyme symptoms are still thankfully absent.

The last few weeks I have done what I can to help with Mother in Law, saw the death of a very old friend whom I shall miss intensely and provided bacon sandwiches and tea on tap to the other friend who is helping WH to build our porch. At least at home normality rules, it still looks like a building site!

The NHS lets me down again

Two weeks ago I saw a new Rheumatologist, new to me but not new 'in post'. WH had seen this chap once and we were both impressed with his approach, study ALL the notes, ask endless, seemingly unrelated, questions, quick-fire fashion all whilst his brain was processing the information at lightening speed. As it happened, he didn't think WH's problem fit his diagnostic criteria and recent events have confirmed that. I was thus prepared to be dazzled with the speed of a clever doctor's mind working overtime for me and overwhelmed by having to answer and hundred questions at once. I was also apprehensive that he would, like his colleagues dismiss me as another, over worrying 50-something.

Disarmingly he greeted me with a smile and with the words that he had studied my entire medical history and had noticed a large number of random ailments which he thought just might be connected. He said I had previously seen all the Rheumatologists in the district and now maybe I should get some answers. He proceeded to outline my collection of symptoms, starting at age 12 and a problem with my wrist, through sacro-iliac problems following being hit with a hockey ball the following year until he reached recent matters with my hands and feet, via skin rashes, allergies and the myriad investigations of the typical heart-sink patient. He then examined me and again surprised me by seemingly ignoring my hands other than a cursory glance and paying far more attention to my arm (long standing rash) and my feet which he poked and prodded and caused more pain then I have ever had in them and that's saying something. He asked me about cortisone I had had in my hands, shoulders and feet and got me generally confused and reduced to a gibbering wreck as I tried to answer him succinctly and quickly. After all, who can remember the precise date they had an injection in the sole of the foot, the pain, yes, but the month, possibly, the year probably. And so it went on. He told me to get dressed and then shouted from the other room to ask if I had ever had anything wrong with my scalp. I had, I have right now. He rushed back in and stroked all over my head, with a gentle version of an Indian head massage. 'Very extensive' was his only comment.

Returning to the office fully dressed, he appeared to be surfing the internet. I sat and waited. Finally he asked me about my family if anyone had arthritis - all except my mother, or psoriasis - my sister, my cousin. He then delivered his verdict. I have probably had psoriasis most of my life and now have full blown Psoriatic Arthritis. He described in detail symptoms I had which no doctor has ever made much of, the rash I can feel but is invisible, the joints which feel like they will burst, the itch I have had for upwards of 10 years but which will not go away, the sores I had on my head and which lead to long term bullying at school. My miraculous recovery last year was due to 2 things, the eradication of the Lyme bug from my system and the fact that the Lyme treatment is an old fashioned treatment for arthritis. A classic case of killing two birds with one stone, or in this case two illnesses with the same treatment. Which is why the arthritis and psoriasis have returned to fight another day but the Lyme symptoms have not. My previous diagnosis of Rheumatoid Arthritis was similar but he felt only part of the picture.

He wrote me 3 prescriptions there and then and I had 4 x-rays, some blood taken and have to have a full bone scan and a MRI of my hands. 'About the only two tests you don't appear to have had already,' he joked. After the scans I can take some of the heavy duty stuff he has prescribed but for now I have pain killers which work (makes a change) and some weird cream made from chili peppers which magic the pain away in minutes. I have to be careful where I put that stuff though!

He smiled, was gentle and caring. I liked him, I trusted him, even more so when he said he has relatives with the same complaint. His aim is for me to be pain free in the long term and significantly better in a couple of months. After all he said you've seen enough people who had missed it, it's about time I had some treatment.

So once again I have been failed by the NHS and their cost cutting, time saving piece meal approach to patient care. When someone took the trouble to view me holistically and look at all the information instead of a tiny part the answer was staring him in the face and probably had been for 40 years.