Wondering where to go from here: I came across this... - PMRGCAuk

PMRGCAuk

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Wondering where to go from here

merryway
merryway

I came across this site last year when I was despately searching for an answer to my continual temporal headaches plus other circulatory symptoms and neck pain, when the NHS were providing none. At the time I had the inflammation bloodtest which came back negative. Things settled down relatively for a few months until this March when I had another big flare up of temporal pain, exhaustion and what I can only describe as internal shuddering coming and going. Again I had the two bloodtests for GCA which came back negative. But the symptoms keep flaring and remitting depending on lifestyle factors, stress and activity and are not going away. I've read that 2 in 10 people have normal blood tests with the condition... so am wondering how to proceed from here as obviously I'm worried about burying my head in the sand and hoping it will go if its own accord if it is GCA. Also part of me doesn't want to take steroids so again preventing me harassing the doctors. I am 64 years old with a history of prolonged antibiotic treatment and antifungal treatment for gynae problems. Hoping posting on here will spur me in to action!

26 Replies
PMRpro
PMRproAmbassador

There ARE no blood tests for GCA - there are just the ESR and CRP blood markers which indicate inflammation SOMEWHERE. But they do not rise in up to 20% of GCA (or PMR) patients.

You may not want to go back onto steroids - but if what you have IS GCA, then not taking steroids could result in you losing your sight. Once it is gone, it is gone and nothing brings it back.

It may not be GCA - there are other things that can cause similar symptoms. But you do need to see a specialist, preferably during one of the episodes, and have some investigations done to rule out what can be ruled out.

merryway
merryway in reply to PMRpro

Thanks for your reply. I haven't been on steroids yet as I haven't been diagnosed. Just told that sometimes symptoms don't have answers! But almost a year now of on off, sometimes severe left temporal headaches (always in same area) seems like it must have an answer.

PMRpro
PMRproAmbassador in reply to merryway

Have you been to a optometrist/optician for a full eye exam? Sometimes if the blood flow to the optic nerve is compromised they can see changes in the area where the optic nerve leaves the retina. They will also see other signs for other things. That would be a good place to start - especially by telling them your fears and the symptoms you have.

But I really would NOT accept a trite "sometimes symptoms don't have answers" - that is a get-out used by someone who doesn't wish to admit they are out of their depth. I had 5 years of being told "the bloods are OK, there can't be anything wrong" - my own fault, I should have toured all the doctors in the practice but I didn't.

Other than the blood tests, has your GP looked at/for anything?

merryway
merryway in reply to PMRpro

Thanks.. Yes, I have been to the opticians twice, both last year and again this March when symptoms flared up badly. The doctor suggested I go the first time. It was making my eye area feel funny but not actually affecting my vision, apart from making a bit hazy. They had a good look each time and said everything was OK so that put my mind at rest a bit. The other thing the doctor suggested was sinus problems and I had some antihistamines but as the discomfort affects my neck and chest also, and the antihistamines haven't altered things I'm not very convinced. The trouble is that once the blood tests come back normal that seems to be the end of the story as far as doctors are concerned.

PMRpro
PMRproAmbassador in reply to merryway

Try a different doctor in the practice - and emphasise the head, neck and chest symptoms as they could all be due to the same thing - and one possibility is GCA.

Hidden
Hidden

Definitely agree not to accept no diagnosis GCA is a serious condition especially regarding the eyesight. Do go to an Optitian and get a thourgh test as well. Best wishes

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi merryway

It’s not so much a case of burying your head in the sand, as actually finding out what is wrong with you - and that you need to do. If it is GCA, and it does sound suspiciously like it despite the negative bloods tests then you could be in for a lot more trouble in left untreated.

It’s difficult to keep going back to the GP, but I’m afraid you have to until you get an answer. You might like to remind them that low blood markers does not mean you don’t have a problem - and that if left untreated THEY could be putting your eyesight in jeopardy. I know, I lost sight in right eye over a period of 4 days, no prior inclination of eye problems!

Plus as others have suggested get your eyes tested for any anomalies.

merryway
merryway in reply to DorsetLady

Thank you for your reply. It is difficult to keep going back to doctors when you get fobbed off but you are right that I must keep plugging on until I get an answer. I have a dull pain in my chest sometimes and a pain in my calf which makes me think it's circulatory related. And if it is GCA it needs to be diagnosed, but if blood tests are negative, I am wondering what further steps I can try and persuade doctors to take. I would pay privately to see a specialist just to put my mind at rest that I am not sleepwalking into worse problems if that is the case.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to merryway

You shouldn’t have to go private, but sometimes it seems the only way. If you tell us roughly where you live, then maybe someone can recommend a good specialist.

merryway
merryway in reply to DorsetLady

Yes, I live in the North West almost on the border with Scotland

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to merryway

Well, why don't you raise an new post asking the question. Sure you will get some responses - bit too far away from me to comment - as the name implies!

merryway
merryway in reply to DorsetLady

OK, thanks

PMRpro
PMRproAmbassador in reply to merryway

It might be worth contacting the NE PMRGCA charity. They may know about the rheumatologists in Cumbria - there is someone who used to go from Cumbria to the support group meetings in Gateshead and one even went to Gateshead rheumies I think.

pmr-gca-northeast.org.uk/

There is also a NW charity but I suspect perhaps more Manchester-orientated.

What is the calf pain like? Is it there all the time? Or when you walk but goes when you stop?

merryway
merryway in reply to PMRpro

Thanks PMRpro. for your helpful information which I will follow up. No the calf pain is not there all the time. Just comes on sometimes at night along with the kind of shuddery feeling I get in my chest when overtired and ill.

PMRpro
PMRproAmbassador in reply to merryway

Perhaps try taking a magnesium supplement and see if it helps? Have you had the "shuddery feeling" investigated? Could it be palpitations?

merryway
merryway in reply to PMRpro

Hi there, no not really. I have had an ECG fairly recently as had problems with blood pressure medication making my heart race and my heart is fine. I do have normal palpitations from time to time. Have settled down with Amlodopine now. I do take magnesium as well.. on my porridge! Goodness knows what the shuddery feeling is.

Hidden
Hidden

"other circulatory symptoms"

May I ask what type of "circulatory symptoms" do you experience if it's okay to ask?

Don't give up merryway. I know I wasn't believed when I suspected GCA because the headaches weren't in the temporal region and my bloods are " normal" I did pay privately to see a Consultant Rheumatologist and he confirmed cranial GCA. My GP unfortunately still doesn't want to know . She says " now what are we calling your condition now ?!!!!" and refers to the steroid sparer that my Consultant prescribes for me as " one of those fancy drugs!"

I am constantly told my level of steroids is too high and " I really need to bite the bullet!!" And so it goes on so sometimes you just have to go with your own instincts and go it alone. All the very best . Let us know how you get on.

PMRpro
PMRproAmbassador in reply to Jackoh

Hmm - wouldn't be my GP for long...

merryway
merryway in reply to Jackoh

Some GPS really are the limit. We've got a very dismissive rude one in our practice. I avoid her like the plague. Five years ago it turned out that I had ovarian cancer after I had paid for a private scan to hurry things along when my symptoms weren't being taken seriously, although I knew something was wrong. After a growth turned up on the scan they were falling over themselves to be nice to me, home visits after my two operations included! But that is just a memory now. I'm glad to hear you got a diagnosis and treatment. I do need to point out that negative blood tests needn't necessarily mean that I am in the clear. And it is a year that I have had temporal pain etc and it is just not going away. Thanks for telling me your story Jack oh. I will let you know how I get on.

Jackoh
Jackoh in reply to merryway

Yes I agree - negative blood tests are not an indication that nothing is wrong. Best wishes in going forward in this.

merryway
merryway in reply to Jackoh

Thank you

Hidden
Hidden

I'm amazed how much abuse you would be willing to take from your own "GP".

Jackoh
Jackoh in reply to Hidden

Don't know if you're referring to me anothermember. Have tried other GPs in the practice and with the exception of one short term one they all are very uniformed re PMRGCA. My GP is one of the senior partners, have tried the other senior partner too. I feel I get good attention from my Consultant, I don't see my GP very often at all - I just work with my Consultant which suits me at the moment. Also hoping to move so I've left things as they are.

Hidden
Hidden in reply to Jackoh

It's up to you. We all struggle with this medical system in some ways if not in the same way.

Jackoh
Jackoh in reply to Hidden

Yes seen a lot on this website unfortunately.

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