OK Several days in and many more questions

[Nonameme]

Saw hospital consultant Monday. Many repeated tests from those Specsavers Saturday before last. He had the Urgent blood test results done at hospital the previous Wednesday but appeared very confused and unsure.

Throughout the entire consultation their were constant physical and telephone interruptions which broke train of thought and made appointment much longer.

He asked similar questions as previously asked by Specsavers and GP and when I told him Specsavers diagnosed double vision he remarked that I did not have it now but later said I did have double vision!

He then tried to use a machine that did not work so had to be replaced and this was bought in by what I now know to be the Consultant.

It was an ultrasound and he was not confident so the Consultant stayed and they did it together.

He then started an actual conversation with me and said words to the effect that he was confused because my inflammatory markers were not raised but everything else pointed in that direction so you do have ‘this disease’. I will give you a further supply (of steroids 60) and come and see me in a week.

I will show blood results below but what struck me was a complete and utter lack of any explanation details of what this disease is it’s out look etc. If I had not been lurking on this site for a while now I would be much more terrified than I am right now and without being able to read have been so thankful for what I have read thus far.

On a personal note I care for my sister who is a bit of a sponge with illness so having just had a cataract operation a week ago too now thinks she is worse than me and has taken to her bed with ‘oh you’ll manage you always do ‘ so what with my already bad sleep habits I am getting no rest at all.

Bloods

ESR borderline at 17

Creatinine above 91

GFR below 52

Potassium borderline 5

Albumin Borderline 3.5

Serum C reactive 3.

Full blood Count -abnormal

Everything else was normal

I did mention that 2 weeks earlier I had been given intravenous antibiotics followed by a week of them due to an abscess so not sure if that would have affected inflammatory markers but he said no.

So waiting to see what happens at next Monday’s appointment. I do feel better in that left sided pain has gotten a lot better scalp tenderness has gone along with all other pain which I personally had though was PMR for many months even the pain in my TKR which everyone laughed at say it’s plastic it can give pain but it is still attached to muscles ?

[piglette]

It sounds rather like a comedy show. How old was the first 'consultant'. Up to 20% of individuals do not get raised inflammatory markers, which seems to confuse some doctors.

[Nonameme in reply to piglette]

Indeed he was really confused by that😡. Strangely enough the senior Consultant was younger by quite a few years. I have a previous thread leading up to this but not very techie and could not find it to continue from there with all the background. And yes GCA was suspected.

[DorsetLady PMRGCAuk volunteer in reply to Nonameme]

That’s because you added it as an amendment to an older post you’d raised -‘

healthunlocked.com/pmrgcauk...

All your posts can be found on your profile page

[Grammy80]

What a chaotic visit..I would have felt worse and more anxious afterward. You said 60 mg of prednisone....what was your dosage to be each day or number of tablets? Did they not take a CRP, C-reactive protein? I take Actemra, so mine is always normal, but results of that would help. Have they mentioned GCA to you?

I'll be blunt....you wouldn't get me out of the building Monday without a thorough explanation...you NEED to know. This site is wonderful and will arm you with 'know how' and support. I wish you well on Monday. Let us know!!! I hope you get to AE if you have double vision again or pain. As a GCAer ....vision issues can come and go but ALL are important.

[Nonameme in reply to Grammy80]

Yes GCA was suspected at Specsavers and written on piece of paper so that I could ask Gp if I had had a recent blood test for this. This was a Saturday so contacted GP Monday and told would be contacted by GP next day. Never happened as surgery had mixed up my number with my sister who had 2 strange voicemails from surgery and went into them and was told it must be a scam as although it looked as though it was from them they would not leave ‘that kind of message’. Later that day I too got an email to say they had tried unsuccessfully to call me. Turns out not GP but physicians assistant. Luckily next day I had a f 2 f with GP who picked it up. Only many months after she had dismissed it as as face arthritis 😳.

[PMRpro Ambassador in reply to Nonameme]

Your practice sounds like a bit of a liability - and is deserving of a complaint. They shouldn't be mixing up two patients, even if they are sisters. All it needs is to ask your full name, DOB and address - two people might have the same name and birthday, the chances of the same address as well is minimal. The PA obviously needs further training if their telephone manner isn't what the practice usually does and they don't recognise it. A potential diagnosis of GCA should be handled as a medical emergency - like a heart attack or stroke. Not postponed from Saturday to Monday and then again and finally dropped. The optician should have sent you to the ED with a letter. You were lucky but you COULD have lost your sight and there was no need for that at all.

I was going to ask what facial arthritis is - but Mayo uses the term as an alternative for TMJ problems (temporomandibular joint) and, to be fair, it is a differential diagnosis for GCA. However - it still should be checked rather than dismissed.

And I think the hospital appointment needs some mention. I wonder if the first doctor you saw was a GP who is wanting to become a "GP with a special interest in rheumatology" which I suspect is becoming part of the change to increasing care in the community. I had a similar experience - luckily only PMR, also with normal bloods. I wouldn't have minded so much but I'd seen the consultant 8 weeks earlier when HE didn't think it was PMR but gave me pred to cover a trip to the USA. The second visit with what turned out to be a GP "with a special interest" was a carbon copy of the first - he'd learned the consultant's technique for that! But he was totally confused and didn't know so "I'll get the boss". Neither was in the least interested in my miraculous response to 15mg pred in under 6 hours - an important clue in a PMR diagnosis. I had expected to see the "Boss" again as I didn't have a diagnosis at that point. I don't mind seeing a minion for follow-up but I'll have an expert on the case for a diagnosis please! In your case, the consultation was marred by interruptions - bad enough with an experienced specialist, but not on with someone who doesn't really know what they are doing. PALS might be able to convey that to the rheumatology department without upsetting them.

[Nonameme in reply to PMRpro]

Thanks, am beginning to recover from the shock of it all, even if suspected. I really do not know what I would have done had I not been "lurking" on this site for sometime with my suspicions - so a great big thank you to everyone who saved my sanity and gave me the push I needed to persevere in these tough NHS times. Just added up that over the last few weeks I have spent over 24 hours just waiting around in hospital waiting rooms - it has driven me to deep depression.

I feel I am extremely lucky that the first signs occurred prior to Covid and were dismissed as "all in my head" and it has been an onward battle ever since, seeing consultants privately and having most of my teeth removed by Maxofacial when they dismissed TMJ earlier this year, even though I am a private Bupa dental patient so had looked after my teeth. Only benefit was cost saving in that they were removed in hospital so free at source. When none of this helped I was nearly suicidal and was put on anti depressants a month ago as I had already made a complaint to practice about this and other problems, I have B12 deficiency but after loading doses no further treatment and levels are 181 - cut off is 180 so classed as "normal" and so overlying symptoms from no treatment and the fatigue is absolutely unbearable at times.

Now if I can only sort out my type 2 diabetes, I might finally begin to feel there is a glimmer at the end of the tunnel. 3 weeks ago GP stopped slow release Metformin which was making me even more drowsy if possible and said we are to wait 3 months and see how I go with no medication. Hb1ac is at 56 this week.

I hate having to go back on PPi's for stomach protection as a year ago I was taken off them in hospital after a nasty C diff episode and my low B12. No one warned me it was going to be this hard aging!

[PMRpro Ambassador in reply to Nonameme]

It isn't usually ...

Is this ALL at the same GP practice? You need out of there if you ask me.

Have you tried sublingual B12? Some studies say it is absorbed almost as well as B12 injections - doesn't rely on gut acid, goes straight into the blood stream via the buccal mucosa. Worth a try. Plus, good doctors know that there are no fixed cut-offs and symptoms count for a lot.

I assume you have cut your carbs drastically? We have people on the forum who have got their Hba1c down just with that - one reversed her Type 2 diabetes. But you do have to be drastic! No processed foods, no added sugar, no rice, pasta, limited root veg and fruit - lots of sugar in some fruit!

[Grammy80]

Oh my heart.....I can't imagine how you feel, intelligently reaching out and getting nowhere. In the USA, my beginning went from December 2018 until August 2019 when, at a local hospital, I got an undeniable diagnosis.

PMRpro has given you great advice of course! and I hope put 'fire in your belly' so that you get the help and the correct diagnosis. Are you taking the prednisone? Did I miss that? How much, if so? I'💞m so thankful you have been cruising the site and hope you stay here; it is such a tremendous aid. I rely on it~💞

[Nonameme in reply to Grammy80]

I am taking 60 mg of Prednisone daily and thank you for your kind words.