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.

So nice to see you

I paid a visit to my Rheumatologist on Wednesday. This was a twelve week follow up from my last appointment in December, (no, I couldn't get the maths to add up either) postponed a further month by the hospital for one of 3 possible reasons, which one they did not specify.

First of all they have changed the waiting area, you check in one area and then are directed to sit in one of five jump seats along a narrow corridor facing a brick wall. This doubles as the chiropody area too so we were treated to a long monologue by an an elderly lady in a wheelchair parked at right angles so the corridor was not blocked. She talked of neighbours long dead,businesses lost and a full rundown of all her relatives faults. No actually she didn't talk she barked, droned and berated, monotonously for hours, or so it seemed. After a few minutes I approached by a nurse and told that I was 'next but one' but there would be a slight wait. The chap on the end groaned. He was the 'next'. He told me his appointment was some 75 minutes earlier. We sat and stewed on a boiling hot day in a corridor with no air. Eventually 'next' was called.

Two other couples then arrived all at once, names were taken and the nurse told me not long to go now, but it could have been worse, the previous two patients hadn't turned up. We all changed seats so the couples could sit together. the nurse came and suggested these late arrivals could go and sit in the coffee shop and she would fetch them. Luckily I had my bottle of water to sustain me. The elderly lady was taken to chiropody, the chap before me came out.

Some twenty minutes later another nurse asked if I had been forgotten. She disappeared, then came back and said "Doctor is reviewing your notes, you''ll be in soon. " Another ten minutes passed. Finally, one hour and forty minutes after my allotted time I was called in.

The consultant beamed, "I haven't seen you for a while have I?"

Er No. I had a locum last time and and the time before that and the last one was horrid. She mentioned his notes. I told her I did not like him. "He's from New Zealand," was the reply, "but he did put you on Methotrexate ." (Only after I had had specifically asked for another treatment when he had tried to end the consultation).

We discussed my diagnosis of Chronic Lyme. "How are you now? " I told her I was better than I had been for 10 years, was responding to the treatment, had good blood test results, all my 'lumps' had disappeared from the palms of my hands and other than the fact my hands are still curling up at night, I was heaps better. I asked whether or not I should see someone for the tendons in my hands which have been noticed by everyone I have seen for the last few years. They are thickened, painful and very stiff in the mornings causing this propensity for my hands to curl up.

"Can you make a fist?"

"Well yes, that's the problem, too much fist", she pushed my wrists up and down and cast a cursory glance at the back and front of my hands.

"OK then, you don't need to see anyone, you can move your fingers." Eh???

I demonstrated my ability to bend over, stretch up, put my arms above my head and behind my back.

"I am concerned that this private doctor is charging you too much. How much do you pay?" I named a figure I knew was about one quarter of her consultation fee as WH has seen her privately in the past. "Oh that's not too bad then." Not too bad, it more like a brilliant bargain. This chap is obviously not in it for the money. "What about the private prescriptions?" I didn't tell her I had stockpiled from the NHS prescriptions and would only need a few. I again named a ridiculously low figure. " You're quite happy then?"

Almost deliriously so I told her. I had found a doctor who believed me, a treatment that works and after 15 years I am improving ,albeit slowly and probably not completely. I am doing more, I had spent the previous morning gardening, I could go out more and what is more I have the stamina not to crash completely afterwards.

"Well we will have to agree to differ then. Your treatment is unusual and not at all main stream. It is very controversial; there are a lot of opponents both here and in the USA" The words left unsaid told me that she was one of them. I already knew that.

"I don't think there is any need to see me again until you want further hep from me. So nice to see you again."

The consultation was over. Why on earth did I bother going?