Monday, June 29, 2009

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.

6 comments:

Blue-green Damselfly said...

I'm fuming on your behalf. I had the experience of a similarly dismissive consultation a few years ago when I was trying to get a diagnosis for my CFS. The man I saw was also charming, older and supposedly 'very nice'. He was extremely patronising, patted me on the knee, called me 'my darling' and put my symptoms down to depression.

I have to say that younger doctors I have seen seem much more prepared to look at the bigger picture and to listen.

I think your post should be read by all rheumatologists in training. Absolutely outrageous!

Joanne said...

I am not sure if I posted so will try again. So sorry to hear your experience.
I don't know if you saw this o Eurolyme recently but you may find it interesting small extract.
http://www.biomedcentral.com/content/pdf/1755-8794-2-38.pdf


Analysis of the gene signature of CFS suggests that
three significant pathways are altered in patients: oxidative stress, apoptosis
and viral-like
immune modulation. Previously, Gu
patients with spondyloarthropathy, rheumatoid arthritis and psoriatic arthritis
were compared
to normal healthy subjects. Of interest was their finding that expression of
CXCR4 was
unexpectedly high among all arthritis subjects. This gene encodes a CXC
chemokine receptor
that is specific for one ligand (stromal cell-derived factor-1), and CXCR4 is
known to act
with CD4 protein to support HIV entry into cells. DNA microarray studies by
Watanabe and
co-workers [42] demonstrated significant up-regulation of the CXCR6 motif in
ulcerative
colitis patients, whilst other work has indicated that the CXCL12/CXCR4
interaction is
involved in several inflammatory conditions, including inflammatory bowel
disease [43]. As
a result, the finding from our study (that CXCR4 was significantly up-regulated
in male CFS
patients) indicates that this gene may not be specific to CFS.et al. [41]
performed a 588-gene microarray whereby


Best wishes Joanne

Unknown said...

Hi, I did see that but I honestly don't know whether I have ever had ME now. The last (good) chap thought I had had Lyme of which most of those symptoms have now gone. It has all really been confused by the Psoriatic Athritis which I must have had for years and never had a proper diagnosis. First off it might have been ME, then Rheumatoid Arthritis and then a fairly definite Psoriatic Arthritis diagnosis confirmed by blood tests in December. That only took 16 years since I first became really ill although I have had bouts of arthritis since 1973.

Jozephine, until our medics are
allowed to think for themseleves and are not over-influenced by Psychiatrists (and the drug companies) this will ever be the case.

Joanne said...

Hi I see Psoriatic Arthritis like many things is a diagnosis of exclusion and there is no specific blood test to confirm.

Oh such a conundrum all these illnesses and even consultants can't agree with each other excepting the usual mantra loose weight or it's all in your head. Gosh I wish I'd been paid their salary for such an easy cop out.

The more you get into Lyme the more you wonder how many other illnesses are triggered by Lyme.
Do we suppress the immune system to stop it attacking itself! or do we try antibiotics to kill an infection which is causing an immune response!

No doubt the arguments will go on long after my lifetime. Thankfully I am now nearly 100% recovered on 2 years antibiotics but still symptoms deteriorate when I stop, hopefully not much longer though.
It has been wonderful to enjoy my garden and blogging after years of pain.

I do hope you will soon find someone to help you.
Best wishes.

Anonymous said...

Sorry to hear your latest Dr was useless. Really reminds me of the ID specialist I saw on the NHS in January- complete prick.

How is your WH? My mum has Diabetes and Lupus and I have a hunch that the statins she was unnecessarily lumbered with either caused or exacerbated her Lupus. She's VERY trusting of Drs so it took a LOT of persuasion from us before she finally decided to stop taking simvastatin.

Her skin problems have definitely improved since she stopped taking it but her other health issues are the same as ever. Luckily, we have a fairly young and open minded GP (I don't mean to sound ageist but I think you have a point about younger Drs) now so when we voiced our concerns about statins and he noticed that her cholesterol level is being managed well without them, he was happy for her to stop taking them.

Neelu

Unknown said...

"I see Psoriatic Arthritis like many things is a diagnosis of exclusion and there is no specific blood test to confirm."

My HLA-B27 was positive and I was told that this is a strong indicator of PA although not 100% definitive.


I have just looked again at the letter the 'good' chap wrote in Dec and it has a complete treatment regime all worked out and which the latest prat decided to totally ignore.

As for WH he is back on statins as of last week, 4 days so far. I await the outcome with interest. Depression followed the last lot after just over a week so I am preparing the flack jacket and shelter!!