Onset of my symptoms in 2008, and a brief description of events since.

[daphne_retired]

July 2008. Bed sheets hard to pull up during night and painful.

Increase of pain in shoulders and hands and wrists, neck and head over next four weeks.

Unable to play the piano for the first time since 1960.

Unable to brush my hair, wash, clean myself or raise myself from toilet seat.

Blood test for Rheumatoid. +ve result. RA diagnosed and referred to rheumy.

Recovered over three months.

Rheumy after six months of onset. Mutually agreed not RA. Discharged.

More flares, some causing pelvic girdle and hips to be weak and unsupportive. Used mobility aids.

More neck, head, shoulder pain.

2011 proved anti-ccp normal with blood test by St Thomas' hospital.

Symptoms of PMR intermittent flares etc.

2012: Private MRI to check cervical and lumbar. Radiologist gave diagnoses of Spondylosis, in cervical some crushing of exit nerve trunks to arms. Lumber has five discs prolapsed for years including odemas and Modic type 1 changes. No rheumatoid signs. Suspect cutaneous vasculitis in left foot.

2013: January, suspect cutaneous vasculitis in right forearm. Major flare suddenly, return of driving licence, immobile for one week then recovery.

2014. Continuing increasing burning symptoms in feet and toes, pain in ribs, hips, neck and head.

January 2015. Sudden onset of acute pain in left temple. Preceded by a very tender scalp for a few days.

Given 40mg/day pred. After three days blood test for ESR alone. Result normal, given after five days and completed pred course. Refused any more treatment by GP.

Pain returned in temple within 36 hours. Went to out of hours GP at hospital. Talked to the registrar and explained symptoms. OOH GP looked at temple saw swelling and tender. Registrar told OOH GP in no uncertain terms medical emergency and fast track to rheumy, give pred at 40mg/day immediately.

Own GP refused to believe events. Now awaiting paperwork to GP from hospital. No medication.

Further info: I am a full time carer for my son who is 38 and suffers with Aspergers syndrome and Dyspraxia, speech clutter and some physiological conditions affect his core muscles and balance. He was not diagnosed until age 36. In the meantime he attempted suicide 3 times during the last 25 years. The vasculitis seems to come on when he suffers from an acute stress reaction. Of course, GP's who were ignorant of Autism and Dyspraxia for his lifetime and did not understand what my son and I were going through, must have had an effect on my health. The dreaded stress.

Since his formal diagnosis, (which I had to pay privately for, using three independant medical professionals), he is now receiving support and financial help.

[PMRpro Ambassador]

If a decent GP read that history they couldn't have much excuse for missing a PMR diagnosis - leading to the development of GCA. Your GP needs a clip round the ear. And I would return to the hospital - and tell them what your GP hasn't done and his intransigence. You need to be treated as a medical emergency. Once that is sorted out - I'd be requesting an appointment with your practice manager and complaining.

And yes - PMR and GCA feed on stress.

[daphne_retired in reply to PMRpro]

Thanks for this reply, PMR pro. I am very frustrated. I will print off my post, and your answer. Then take both letters to the practice manager, to pass to the GP. Also I will take my copy of Kate Gilberts book, which I am in the middle of. (I will finish it first). Then buy a few copies for my family to read, and one for my most excellent physio therapist. all monies will go to the PMR group, (I have read). Wonderful. I will be sending donation too.

One serious question, that you may know the answer to. How long in time, typically, will I have from not getting the temple pain treated with pred to losing any sight in that eye.

[PMRpro Ambassador in reply to daphne_retired]

That is truly a case of how long is a piece of string! Very occasionally someone may have no warning signs, others may have weeks of symptoms and be lucky enough to escape unscathed. That is why it must be treated as a medical emergency because you don't know - it is in a sense a stroke, interruption of blood flow to a nerve that deprives it of oxygen. Like patients who have TIAs (transient ischaemic attacks) which are a warning of a possible major stroke ahead, the warning signs should be taken seriously.

With his actions, your GP has effectively called you a liar to your face and is putting your sight at risk. I'd be up at the hospital asap - because they will have the records of what the doctor that day said.

[paddyfields in reply to PMRpro]

Just to reinforce what you have probably thought of yourself, it is perfectly reasonable if not essential you go back to what is at this moment your only other recourse and explain your GP won't give you the meds. One sometimes wonders if, I hope minority, of GP's ever qualified in the first place. These characters don't seem to have even basic general knowledge of someone who takes an interest in medical matters and reads the odd woman's mag.or daily newspaper!! Ii suppose they are afraid to keep their minds open because they might suffer overload.

[daphne_retired in reply to paddyfields]

Interesting this post. Thanks. I have been battling with my previous surgery and three GP's over 30 years. Mt youngest son has dyspraix and Aspergers, speech clutter and a balance problem. All of his symptoms I have been aware of since his childhood some 30 years or so. In the end and in desperation, I paid aout a few thousand pounds for neuro-psychiatrist, neuro=psychologists and neuro- physiologist. The with their full reports under my belt I was able to get his Personal Independant Payment from the government and to educate the GP's. Thirty years ago he would have had DLA, special schooling and work assistance. Because he had to wait 30 years (yes, I was slow, I am only a lay person), my son committed suicide three times, the last two times using paracetamol and the numbers were 60 the previous time and 94 the last time. How he survived is beyond understanding. The fact is he did, the NHS save lives. But why have to go through all that. No wonder I am now ill, bringing up a child as a single parent for that time, under the threat of teachers, police, and GP's all of whom were telling me it is my fault. All the time he was disabled and the GP's denied him the treatment and the care AND the money. It makes my current battle with my new GP seem like a little catfight in the playground. Please, everyone, if you have a good GP you are very very lucky. D

[olive2709]

Big hugs you are going through it .You have more patience then me I would have killed someone by this time

[pmrdec112014]

I have nothing to moan about Daphne! I take all my hats off to you. Best wishes to you.

[daphne_retired in reply to pmrdec112014]

Hiya pmrdec12014, what a good name. I always sing: ''count your blessings count them one by one, for it will surpise you what the good has done''. The PMR pros on this site have helped me no-end. I have just finished the GCA section of Kate Gilbert's book. If you have not a copy, I recommend it. D