PMR Disability

[Rose54]

Hi

Just wanted to share with you all

attended work health assessment today with a private medical company due to being of sick for 12 weeks .Very understanding GP who says I have been treated appallingly by my GP practice and urges me to make a complaint .Due to myself having to request blood test for PMR and GP informing me bloods came back within normal ranges .Only to be told 3 days later by another GP inflammation markers where raised in bloods .Previously to this I was not offered blood test as routine bloods for underactive Thyroid had been done in May .If only GP had done his job maybe I would have started Preds 10 weeks ago instead of 5 .

I know I should make official complaint but how will that effect my care I have been with them for 61 Years and even if I changed practices who's to say things would be any better. So I have decided to speak to my GP when next I see him and ask why he did not pick it up .Hopefully this will improve the care he gives me

Private GP today said any medical Student in their last year should have been able to diagnose PMR as I have all the classic symptoms for the last 5 years I have been diagnosed as having CFS

by all GPs in practice .

But the good news is in my medical report it will state diagnoses PMR that it is a long term disability and as such I am protected under the Disability law and will not be fit for work for at least the next 6 weeks.

I know I should take the complaint to a higher level but it will only cause stress and I don't have the energy and certainly don't need the stress .

Their is a light at the end of the tunnel after all.

So all you fellow sufferers I feel it is a giant step forward

Best wishes to you all

Rose

[PMRpro Ambassador]

Do ask to speak to the practice manager. Unless this is sorted out the next patient will be treated as badly as you have been.

[Rose54 in reply to PMRpro]

Hi

I am aware that I would have to go higher than the practice Manager as already been informed nothing would be done .Plus in the course of my job have to work closely with all GPs in the practice I support lots of vulnerable people who are registered their at least I can ensure they get the treatment they deserve .I do intend to sort it out with the GP at next visit I am determined to get a answer to find out why he missed the diagnoses and hopefully when the next patient with PMR comes along he will be more aware

[PMRpro Ambassador in reply to Rose54]

Fair enough - but it is time they had a way of sorting this sort of thing out. My diagnosis was missed for 5 years - because my regular doctor was focussed on lab values not the symptoms. Another GP in the practice would have recognised it - but was part time and on maternity leave for most of the 3 years I was complaining so was never my first choice. I had textbook symptoms - but normal labs.

[Rose54 in reply to PMRpro]

I agree but will make sure next time anyone comes along with symptoms he is more aware .I will also make sure he is aware that I know I am able to take it further and the reasons I am not doing this .I know thy have practice meetings and will ask him to raise issues regarding diagnosing both PMR and GCA I have information from Arthritis UK re Preds and reduction to take along with me. As his methods are out of date also have knowledge from this site that so many diagnose are being missed due to lack of knowledge and relying on blood tests being in normal range and looking at age .I am 62 but aware their are many people registering here weekly who are younger.

I am fighting out corner and will continue to do so at any opportunity I get as I don't feel anyone out their realizes what a life changing illness this is.

Rose

[PMRpro Ambassador in reply to Rose54]

You will find a lot of information at the northeast of England PMRGCAUK website - it is an affiliate of the national charity but has been in existence a lot longer and has many links on it for reliable and approved information including British Society of Rheumatologists guidelines and research all in one place. It may be worth you looking at and suggesting the members of your practice also have a look. They also have good patient information, also available as a booklet.

pmr-gca-northeast.org.uk

[Rose54 in reply to PMRpro]

Thanks

I will look on the site and print information off to take with me I have a week before I go back to see him .

Rose

[Sheila39 in reply to Rose54]

Well said Rose, I was diagnosed at our local Hospital with strained ligaments,sent home with my arm in a sling...

Next day presented myself to my local Dr who was new to the practise..straight away she spotted that I had PMR,before the blood tests confirmed it to be true.she gave me Pred 20mg daily.Im now thinking that I may also have GCA ..could anyone tell me if they have the same symptom s....at times when I move my head my brain feels loose the pain is almost unbearable especially when I try to bend down,or turn over in bed,my neck is so painful it can barely take the weight of my head...also my neck at the base of my scull is very painful to touch?.

[Sha9rons in reply to Sheila39]

Do you have blurred or double vision and is there pain when chewing and/or swallowing? You may want to get to doctor as they should do vision test (when I did test of reading the various lines of letters, I could only read the top line). The dosage for GCA is higher than for PMR and it should be checked out right away as vision loss in the eye (often pain in one or other temple).

[PMRpro Ambassador in reply to Sha9rons]

An ordinary vision test would rarely show anything in GCA - the effects can be so variable. What is required is an examination of the retina, the back of the eye for signs of poor oxygen supply to the optic nerve but even that isn't conclusive.

But anyone with the blurriness or double vision you mention should get it checked asap. Another sign is unbearable headache but that only appears in about half of patients as the first sign.

[Rose54 in reply to Sheila39]

Hi Shelia

Am I correct in thinking you too have only just stated on this path .

I am unable to answer you questions but know you will get plenty of helpful information from those who can

Best wishes Rose

[PMRpro Ambassador in reply to Sheila39]

In case you don't see the other post:

"An ordinary vision test would rarely show anything in GCA - the effects can be so variable. What is required is an examination of the retina, the back of the eye for signs of poor oxygen supply to the optic nerve but even that isn't conclusive.

But anyone with the blurriness or double vision you mention should get it checked asap. Another sign is unbearable headache but that only appears in about half of patients as the first sign."

Do go back to your super doctor and ask about the head pain - but urgently. You might get more response at A&E now as you have a diagnosis of PMR but I wouldn't hold my breath!

[greylife in reply to Sheila39]

When first diagnosed with PMR one of the symptoms was pain at base of my skull, however finger pressure over the area created more of a relief, although the area was tender. The 20 mg. initial dose took care of everything.

[jinasc in reply to Rose54]

Rose

When, hopefully, you visit the North East website, take a look and see if there are any support groups near you.

We could do with more people who are prepared to 'fight our corner'.

PMRpro and others have been fighting this particular corner for 8 years and we have managed to raise the profile of both PMR & GCA but there is still a long way to go.

[Rose54 in reply to jinasc]

HI

I am on the very lovely Isle of Wight unfortunately no support groups here and getting to a mainland group would take so long and involves getting a fairy to the mainland.

But information from this site has proved invaluable

[PMRpro Ambassador in reply to Rose54]

Love the idea of getting a fairy to the mainland - that'd make the journey worth it for me

[Rose54 in reply to PMRpro]

I am defiantly away with the fairy's today.Brain not working today .

I will be looking for fairy's next time I travel to the mainland by ferry will let you know if I see any

Rose

[babssara in reply to PMRpro]

me to x

[babssara in reply to Rose54]

Go girl go x

[babssara in reply to PMRpro]

Agree x

[babssara]

Hi, information for when you feel mentally and physically stronger, as this illness certainly affects both.

I had a very similar experience to yous. I was diagnosed privately in July this year. Since then been on pred. Rhuemy said to get copies of all blood results for reference (to see if levels raised lowered or same. When I requested these from my practice the computer printouts on ALL of them said, tell patient normal if rings. Not, so, all abnormal.

If I were to make a complaint i would:

Only do it when feel able to (no time limit for somplaint submission)

If, before a complaint is made, you would would like to know why told results normal when clearly not, ask if the Practice Manager could be present at this consultation, for record purposes only

If not happy with GP answer. Decide if you would like to make a formal complaint, as I say no time limit for submission so you wouldn't need to make a hasty decision.

ANY complaint, whether, medical, practice, attitude etc should not have any adverse treatment of you. If by any chance it does, contact PALS, for advice. They are there to act as patient advocate in these situations.

Good luck and really don't worry about work. Employers have dealt with this many time over the years and therefore used to decisions like this and should act according to guidance.

Babs x

[Rose54 in reply to babssara]

Thanks Babs

I am going to speak to my GP next week as I don't really want to change GPs .We only have 3 GPs practices I can register with and need to work closely with all GPs practises in the course of my job .

If I have anymore problems I will take it further but aware if I contact practice manager all will happen is I will get a letter to say sorry and it will be kept in house.

GP has been very helpful in supporting me to apply for disabled bus pass and done letters for me to support application for PIP.

I just want explanation re blood test

Will also ask for results of blood test which I have not yet done

Take Care

Rose