Any help or advice please

[Lucy5555]

Thank you to everyone who answered my first post on here I'm sorry I didn't answer you all

. I have been having a lot of different health problems for a long time, years, a lot of which overlap each other, with various different diagnosis and various different specialists and to be honest I am feeling pretty let down by the whole system.

I have been having problems with my veins and arteries for a good couple of years and have been more or less ignored and now I am at the stage that I have been seen by the vascular surgeon who arranged some scans, but I'm still waiting for the results.

he did say when I saw him that he thought the problems could be actually being caused by a heart problem , but it turns out he wasn't given all my symptoms by my gp and other specialists.

Since I saw him all my symptoms have got so much worse, and I'm really annoyed and saddened now because I've been telling different specialists things but no one seems to talk to each other it is all such a long story and involves so many different people that I can't possibly list it all.

So I am going to ask anyone's help with some of my symptoms which I think could possibly be caused by giant cell arteritis. My ESR and CRP are normal at the moment and have been for a while but I do already take steroids because I have secondary adrenal insufficiency and produce absolutely no cortisol of my own, so I have realised from people's answers that you can have normal ESR and CRP anyway with giant cell, but also because I'm already on the steroids that could be the reason why as well.

I'm already under a rheumatologist, ophthalmologist, orthoptist, ent, maxillo facial, neurologist, etc etc but they all seem to not know what I see other doctors for and put it all together.

So I'm going to say some of the problems I've had which are a bit suspicious in my mind and are being ignored or not being seen as a whole picture kind of thing.

Horrendous. headaches especially at the front and temples

Can't touch my scalp at times

I suddenly can get like a bump as if I've banged my head but haven't and I've realised it's veins I think.

The veins on my forehead protrude like mad.

The skin across my forehead started changing and sort of thickening

Terrible tinnitus which I have an in ear device for to try drown it out

Painful ears, pressure, hearing changes.

One red hot ear all the time

Jaw pain to the extreme

Small vessel disease in my brain which first showed at around 48 ????

Awful eye pain, pressure, hot eyes

I do have double vision due to needing prism lenses, but I now have terrible blurred vision in each eye, on their own

double vision, blurred vision, to the extent I can't read much now even, reduced field of vision, floaters,

My left eyelid droops and actually shuts a lot of the time

Head drop syndrome ( they've looked at MG but decided no)

The eye that shuts gets swollen and protrudes almost and blood shot

Constant congested nose

Sores in my nose and mouth

I did see the opthalmologist a couple of months ago because I pushed about everything, but they decided by looking in my eyes and from a brain scan that I'd had to check my small vessel disease in my brain, that there wasn't a problem with the eyes themselves.

No reason for the eyelid droop etc. And said the protruding veins on forehead weren't significant.

Since then, things have got so much worse and I'm really struggling

I'm disabled anyway and it's hard.

I do have as I said, other vascular problems, very prominent veins, very bad swelling and circulation in legs etc which I'm waiting on results.

I'm sorry this sounds like a long rant, but I'm at my wits end now

I'm sure I've missed off loads of stuff that I'm wondering about, but if anyone can offer any advice it would be so much appreciated.

Please, if I don't reply to everyone, please don't be offended. I'm feeling awful and finding it hard to type.

I can hardly see my phone now, because I've been on it for a bit to type this ( it will improve a little bit if I stop for ages, but doesn't go away, is that significant??????)

But I will read every answer, or my daughter will.

Update,..... I've got an " urgent" appointment now on Monday, with the hospital opthalmologist again.

Thank you and best wishes to everyone xxx

[Billiebobdog]

No help except sympathy and I hope you have the strength to bang all their heads together and get someone to co-ordinate your care

Also I was going to say if you have a good ophthalmologist then I would certainly be asking their help, as you seem to have managed

[DorsetLady PMRGCAuk volunteer]

Hopefully the ophthalmologist will do an in-depth examination and get to the bottom of the head/eye issues...that plus the ears sound very GCA ish to me...

[123-go]

Hello, Lucy5555. I can't imagine how you manage with all the conditions and symptoms you write about.

Firstly, I hope your appointment with the ophthalmologist is productive and that a thorough examination is carried out to look at the back of your eyes. Your eye, headache, pain in your ears and your jaw problems are significant and shouldn't be brushed off and as they are indicative of Giant Cell Arteritis. The ophthalmologist should be able to explain why she doesn't think this is the case. The eyelid droop may be a sign of nerve problems that the neurologist should investigate and for which there should be treatment.

Secondly, I feel that the lack of joined up care you are putting up with is atrocious. You shouldn't have to repeat everything each time you are seen in a different clinic at the hospital. Whoever you are seeing at the time should be able to see other doctors' reports on the computer. I am assuming that most of your appointments are at the same hospital??

Please let us know how you get on in Opthalmolgy.

[PMRpro Ambassador]

A lot of what you list could be GCA - what do you mean by "Jaw pain to the extreme"?

Typical GCA jaw pain is claudication - aching pain that starts when using your jaw, chewing or talking for example, then stops when you stop moving it only to start again when you start the action. The visual symptoms in GCA are not because the eyes are involved - but the blood flow to the optic nerve is impaired and I imagine that if you have small vessel disease in the brain that could contribute to it.

But there are other things that could cause it, other forms of vasculitis and some rheumatological disorders that can cause poor blood flow in the neck such as spondyloarthropathies. Something that was called Wegeners arteritis and now called GPA could cause the nose problems you mention. It really is very complicated but I;d have thought one of your doctors might have thought about something different!

This might be useful if they aren't aware that GCA can cause ear symptoms:

pubmed.ncbi.nlm.nih.gov/314...

And it is rare, but there are cases of 7th and 8th cranial nerve palsy - and the 7th would affect the eyelid while the 8th the ears.

[piglette]

I would have thought they need to diagnose something such as GCA. The trouble is you have lots of specialists looking at different things and so looking for different results. Probably some have never even heard of GCA. If you could try and sort the possibly GCA symptoms out first with steroids that may help?? A friend has the auto-immune disease Myasthenia gravis and he has eye droop. I may have got it totally wrong but just a thought.

[Nextoneplease]

Hi Lucy 😊

Some great answers here already, I hope you find them helpful and that the ophthalmology appointment leads to some answers.

You really shouldn’t be left to struggle and battle the system like this! Are you able to take someone with you to your appointments? Difficult with Covid rules I know but I feel you might benefit from having someone advocate for you/ help you to ask your questions/ think through the answers after consultations.

Sending you hugs

Nextoneplease x

[CarolF1312]

Dear Lucy, I'm sorry I'm not able to offer any advice but I can send you love and sympathy. Hearing what you're going through puts my struggle with PMR into perspective. Hope you get the help you need very soon 🙏