Do Normal Blood Tests Mean No PMR/GCA

Bones, joints and muscles
1

Hello everyone, great forum with excellent advice and info smile .

I hope someone can help, or give me their opinion.

I am 49 year female and have had increasing aches over the last few years, visited Dr Friday, he asked why had not been before, I said I thought everyone ached as they got older. After listening to my symptoms he said he was going to test for Polymyalgia although I was too young.

I am fairly fit, active with 3 big dogs to exercise, work full time and correct weight for height.

Suffered migraines since I was 10 years old, these have changed in the last year or 2, less violent and more eye temple pain

Neck has always been dodgy since whiplash, 11 years ago

Bad shoulder for 5 years, partially resolved with physio but still nags and really bad if used too much, throwing ball for dogs, overhead use. Both shoulders and upper arms ache regularly

Knees, sore for a couple of years, upstairs sore, downstairs feel they will give way

Hips, last 6 months feel like they are locked after 10 minutes in a comfy chair

When I get up I waddle stiff legged until everthing frees up

Terrible cramps in feet, burning in shins

I am sore in most of these places all day everyday at a low level with occasional more pain in one or other

The thing that sent me to the Dr was I had horrible nauseous head for 4 days, very drowsy, pain would ease for an hour then change position or bend and back again, woke from a nap and left eye vision was very hazy, took an hour to correct, quite a few times in the morning it takes a while for me to see clearly.

I had a blood test Friday, rang for results today, apparently all 9 tests normal. Dr on hols so I have an appointment with him 1 Sept.

Does this mean I definitely do not have PMR, would be great because it seems that you all go through so much to get the condition settled and medication reduced.

Does anyone have any idea what other things he may suggest in the way of tests with these symptoms?

I know it will be opinion only but I would really appreciate that, I need to get this resolved.

Thanks in advance

j

2

Hi

I am new to PMR I was diagnosed in March, my bloods came back normal

My GP still thought I had it so he started me on some Steroids.

within 48 hrs I was a new woman I could move my shoulders without the severe pain although I still has some stiffness for a couple of days.

It was just amazing as only a few days earlier I couldn't even lift a cotton sheet up off the bed, and couldn't dress myself.

because I had no pain I came down off my steroids way too soon and within a week I was back to square one ( we never learn )

There are some wonderful people on this site who have had years of experience

with PMR so I am sure they will answer your questions better that I ever could.

Take Care

Shirley

3

Hi kernow,

The fact that your blood levels for ESR and CRP are normal DOES NOT RULE OUT PMR. It is particularly common for young patients with PMR to present atypically (under 55) and if you google \"PMR GCA UK northeast support group\" you will find the official guidelines for the diagnosis and treatment of PMR. They basically say the presence of 3 or more of a range of signs and symptoms should lead to investigation for PMR. Your description of your stiffness and pain would be covered I am sure. I have normal blood levels and definitely have PMR! Steroids gave relief in about 6 hours - also generally taken as diagnostic of PMR. Other things that might appear similar just don't respond so quickly to a dose of prednisolone.

However - I find your description of the head pain and visual signs quite worrying as they could well suggest GCA or temporal arteritis in themselves. I have no idea whether the ESR is always raised in GCA as I am not a rheumatologist but PMR can present very differently from the normally assumed versions - why not the same with GCA. GCA is not to be messed with - it can lead to blindness if not diagnosed which is irreversible. As far as I know, the only absolute diagnosis of GCA is with a biopsy of the artery. Patients with untreated PMR are at a much higher risk of developing GCA and you do seem to have had something very like PMR for some time.

I'm sure MrsK will be along and make her recommendations (she had GCA) and I'm also sure she would say go back to the doctor before Sept 1st. She may even suggest a visit to A&E - and before anyone chews me out for suggesting that, GCA is a medical emergency when present and one visit too many to A&E for something that could make you blind is not a problem in my view. Whatever it is, the symptoms you describe need clarification and as soon as possible. Another option might be an emergency appointment with a good optician.

best wishes and do keep in touch and let us know how you get on,

EileenH

4

Hallo kerno, you have come to the right place. You will learn more from this forum than any GP will have time ( or, dare I say, in some cases, ) the knowledge to give you.

As far as I know, the only absolute diagnosis of GCA is with a biopsy of the artery.

I believe ultrasound is being considered but don't know any details.

She may even suggest a visit to A&E - and before anyone chews me out for suggesting that, GCA is a medical emergency when present and one visit too many to A&E for something that could make you blind is not a problem in my view.

Absolutely. I was off in a big hurry to my surgery when I feared my symptoms might be GCA. I would insist on an emergency appointment at my surgery if I had you symptoms and I would be given it. With Bank holiday on the horizon you don't need to be kept waiting.

Having said that, my symptoms proved negative as I hope yours will, too but you cannot be accused of making a fuss about nothing.

Best of luck and let us know how you get on and join in this forum with you questions and experience. BettyE

5

Shirley and Eileen, thanks so much for replying so quickly.

Whoever gave me the results just said there was no request for me to go to surgery.

My Dr. mentioned a telephone appt, maybe he meant me to do this while he was away, he also vaguely mentioned eyetest. I ill call and ask a Dr to look at my notes tomorrow.

I do wonder because the discomfort is low level that is why the bloods are clear, I have only had one episode where I have needed help out of bed, but I hurt somewhere all the time, and some mornings the nausea and wearines is worse than the aches.

The headache change is the biggie for me, in all the years of painful vomiting with migraine it has never made me feel as wretched as these heads do.

I'm monitoring my BP as it was high at Dr's

Thanks again, I wish you both well in your fight with this disease.

jayne

6

Hello Kernow

You have already been given good advice and, as Eileen has said, your pains could be connected to PMR in spite of normal blood tests, BUT as soon as I read that when you wake from a nap you have hazy vision, that rung alarm bells with me.

I have both PMR and GCA (Giant Cell Arteritis also referred to as Temporal Arteritis) and although all the inflammation is now under control with steroids, one of my early symptoms was nausea and vomiting and I, too, can wake up from nodding off in the chair with slight blurring of one eye. PMR, undiagnosed and therefore untreated for a year, led to me developing GCA.

Untreated GCA can lead to loss of vision without warning. This is too high a risk to ignore. Don't wait for your next GP appointment on 1st September but go to A&E and tell them your symptoms and your concern about GCA.

The only definitive test for GCA is a temporal artery biopsy but if a short course of steroids were to be prescribed and they relieved most of the symptoms within hours to a couple of days then that usually leads to a diagnosis of PMR and/or GCA.

I don't mean to sound dramatic and I sincerely hope you do not have GCA but there are sadly people who have lost their eyesight through undiagnosed GCA. I would prefer to feel a bit embarrassed if by visiting A&E I discovered that I didn't have GCA than risk the alternative.

Very best wishes and do let us know how you get on.

MrsO

7

Kernow

I've just noticed your 2nd posting and your mention of your raised BP - my BP went through the roof with the arrival of GCA in spite of BP medication.

MrsO

8

Kernow

I have just read the thread.

Go to www.pmr-gca-northeast.org.uk and the click in the link to Useful Information.

Download both Guidelines from the BSR (British Society of Rheumatologists) issued June 2009 on PMR and GCA.

Take them with you to either the GP or A&E. DO NOT DELAY.

When you go to the A&E make sure that you see either the Consultant in Charge of A&E or the Opthamologist.

Sometimes, and its not their fault, the registrars in A&E are not aware of GCA. This is not surprising as GCA occurs in about one in 50,000 or so the NHS stats say.

Again, do not play around or wait, if you lose partial or total vision - its gone.

9

BettyE, thanks for your reply

I have health insurance through work so wonder if can get testing this way, need to see Doc again, think you are right about info, quality of this forum is excellent

Glad you were negative for GCA

MrsO

Thanks for such a full response, good to hear your GCA is controlled.

You hit the nail on the head, I am scared of embarassing myself by blowing this out of proportion.

Just now my head has started to ache and I have small pain in temple, twinges in my eye, this could be because I'm stressing over all this, or not :oops:

I will make a call to GP tomorrow for a review of my notes, what would A&E do if I went there?

Thanks again for your help

jaynexx

sorry took so long to reply, can't type and massage toes at same time, big cramps at minute.

jayne

10

Kernow

Obviously we were both typing at the same time.

Go to A&E now - do not wait till tomorrow - do not be embarrassed - just go.

11

Kernow

Now don't you worry about what A&E will do when you go there - that is their job, just tell them your symptoms and take the Guidelines MrsK has referred to. A&E are there to help you.

MrsO