Could this be GCA even though bloods are normal?

[JOT17]

Hello, I have read so many interesting stories on this website since seeing a neurologist two weeks ago.

I went because I was suffering from very bad right sided headaches and I couldn't find anything to relieve the pain. The pain is in a direct line from my eye along the side of my temple and down into my neck- it is much worst in the mornings and I feel permanently as if I have a hangover ( sickness achey very tired generally listless). I have lost some weight, possibly because I don't really fancy food and keep getting hot flush like symptoms and night sweats that wake me up.

I have always suffered from Migraine and to begin with thought I was just going through an episode of having migraine every day, the triptans I take gave some relief but not for very long and the symptoms just seemed to return more quickly after this.

I had also been suffering with bad right sided shoulder pain for a few months before, and have had physio and massage on this, which seems to make the symptoms worst not better.

Prior to this I had had a flu type virus, other than that I am fit and well and always active, although not any more as I am to afraid to do anything in case it makes the pain worst.

The neuro want to rule out GCA and asked for a blood test, my GP has told me the result is normal, but the pain doesn't seem to understand that!!!

I am a little concerned and very fed up that nothing else has happened for two weeks.

I am going back to see the Neuro tomorrow but I am wondering if going to see a rheumatologist would be better? I have private health insurance, but dread going back to see my GP to ask for this- as they have been no help at all!

Any advice would be helpful as my poor head is throbbing away and i cant find anything to stop it!

Thanks and I wish you all quick recoveries!

[PMRpro Ambassador]

A rheumatologist would certainly be better - although neurologists deal with it in some countries I don't really know why. It isn't nerve problems in any form.

Up to 20% of patients with PMR/GCA have normal blood markers - no-one knows why, they just do. That is why it should be a clinical diagnosis - on the basis of signs and symptoms and what you describe does sound suspicious. It may not be but it is definitely a consideration that has to be put on the table.

Where are you?

[JOT17 in reply to PMRpro]

In Buckinghamshire, and the consulatant was at the Radcliff in Oxford.

Would I need a GP letter for a Rheumatolgist or based on symptoms and the Nuero saying it was a strong possilbity would I be able to go anyway?

[PMRpro Ambassador in reply to JOT17]

That would probably depend on the specialist and your private insurance - you would have to ask them. I know someone else got a BUPA approval for a second opinion. I've never been privately.

[Hidden in reply to JOT17]

Prof Rashid Luquami is in Oxford. I am sure he sees patients privately and is interested in Temporal artery ultrasound for GCA.

ndorms.ox.ac.uk/team/raashi...

I think that the Temporal artery ultrasound is made for patients like you where there is clinical suspicion but not enough boxes ticked to diagnose definitively.

[JOT17 in reply to Hidden]

Thank you very much for this, I will follow up on this and see if I can make an appointment.

[Hidden]

My ESR has only ever been slightly elevated while my C-reactive has always been normal... I had been sent to A&E by GP who was sure it was GCA, they sent me home, because bloods normal. A week later the GP sent me back to A&E and this time, even though bloods normal, they listened and put me on steroids immediately.

[JOT17]

And have the steroids helped you?

I guess I need to wait until tomorrow- but I sure would like to feel normal again!

[SheffieldJane]

Good luck with this. I see that you’ve had the good, informed, practical advice. I was just struck by your description of the hangover type feeling along with the headache, nausea and killed appetite. I haven’t heard anyone describe the symptoms quite like that before but it certainly describes how I feel now on 7 mgs reducing to 6mgs, and how I felt in the early days of the illness.My diagnosis was PMR in March 2016.

I hope you get an accurate diagnosis soon. PMR pains tend to be bilateral and I understand from reading that GCA and PMR can both be present and are closely related. I would head straight to A and E if I got visual symptoms, or actually if I was worried that everything was moving too slowly. I think a good Rheumatologist is your best bet too.

[Brantuk]

Another sign to check for is hard skin on your feet. Specifically on top of your toes and under your heels. Needless to say I was very surprised when the first consultant rheumatologist who diagnosed my GCA asked me to take off my shoes and socks, when all my early symptoms were (like yourself) around my head - very puzzling at the time. But GCA can cause peripheral neuropathy so it's worth checking and mentioning when you do see the right rheumatologist.

[Hidden]

Hi, I have just replied to Angiek and you might find this helpful. I too had normal blood tests which meant my ophthalmologist did not do further testing. He has since apologized and said he had not seen this before (GCA with no raised inflammatory markers), but it can happen. I hope things go well for you.

[Poppy_the_cat]

I am Hashimoto's with dreadful gut issues.

I have had pain like you describe for I would say about ten years. I have all the pain you describe, including to the back of my head just beyond my right ear, covering the size of about a large orange in surface area, that some days feels like it's on fire! At times I have actually banged my head to momentarily relieve the pain. I also get very nasty pain even down the side of my tongue, always on the right. I can even experience pain for taking a deep breath in the cold; the cold air rushing into my right nostril provokes a terrible burning nerve-like pain.

I tried to explain this and see if it could be investigated. I was laughed at. After a road traffic accident and the case that followed, I was entitled to see my Drs notes. I was appalled at what had been written. Anybody reading my notes would have assumed I was a hysteric, a hypocondriac and quite potty to say the least! I was shocked. Some of the notes were pure conjecture, not remotely based upon observation but mere personal comments!!!!

After enduring this pain for a decade at least, head, temple, jaw, neck, shoulder and shoulder socket...after agonising massage and physio treatment at a Mineral hospital, which did nothing for me at all, but in fact made me feel worse... I have just added it to the woes that clearly I have to put up with.

Recently for reading up on this forum I muted the point with reference to PMR & GCA...but my Dr assured me that my blood tests "were fine" and it was "not so"... Hhmmmm.... I am beginning to wonder and it's perfectly logical when you think about it. To get from 'A' to be 'B', you don't just dematerialise from one state/location to another...there has to be a distance travelled point... What is there is a Precursory state of PMR & GCA??? Could this explain the 20% whose blood tests are negative but present with some of the symptoms??

An interesting idea...

However, I am all about practicality.

What can I do??

What I have done is focus on assisting and repair improved gut function.

By making and drinking my own fresh Kefir daily my gut biome is improving. As a result I can without any doubt say, that all the supplements I have taken over the years and never benefitted from...the situation is now changing.. Once again my gut absorption bis starting to work. The Vit B12 and B Complex, But C, Iron are certainly having effect. My back pain is improving as is my 'general nerve endings pain' I'm my head is improving...and it's all down to gut repair with Probiotic Kefir.

I suggest you try it. It will certainly do you no harm.

Poppy the 🐈

[JOT17 in reply to Poppy_the_cat]

Hey Poppy thank you for the reply, I am also a big fan of Kefir and have been drinking it since a bout of UTI infections a couple of years ago- it has certainly 'helped' with many things and I would recommend to many - but hasnt helped with this!

I do really understand when you say people just look at you as if your mad- I have certainly had that experience, or being told that I am 'just' stressed!

I do have a stressful job but am currently off and it has made no difference at all- and I love my job and want to get back to it.

Wishing you well and hoping you find some relief soon.

[Poppy_the_cat in reply to JOT17]

Lovely to meet you JOT,

Well I know exactly what mean about stress. The Broken Brain Docu-series recently explained many interesting things, but one I picked up on is that some people genetically have difficulty "coming down from their own cortisol", I put myself in that category... Once wound up like a coil, it's hard to unravel!

I am amazed at how much more I am benefiting from the supplements, so quickly too... it definitely has diminished my pain !!?;:'__€#!!!

I don't take any painkillers anymore.

Keep taking your Kefir. Keep a diary to chart your progress!

Poppy the 🐈

[Carrollee]

Hi JOT17. Just wanted to add to what Keyes has mentioned. I attend Nuffield Orthopaedic hosp in Oxford under prof Luqmani's team. My doctor phoned the prof from his surgery for advice and I was seen a week later (nhs) for diagnosis of GCA (I already had pmr) then a biopsy about 10 days later. About a year later I started having ultrasounds as part of my follow up appointments every 6months. Have had three now. They may use more ultrasounds than biopsies now, have never asked. The new patients are generally seen at the Tuesday clinic and follow ups are on Thursdays clinic. All the best cc 🤗