Another Consultant...Another Diagnosis!!

[Trixiechamp]

Hi all

Well today finally arrived and I met with the Rheumatologist Consultant at my local hospital.

He seems to think the original GP's diagnosis of PMR/GCA is correct and doesn't agree with Dr Hughes theory that it may be RA or Lupus type autoimmune.

I have had an X-ray on my chest and hands, he sent me for blood tests (21 different tests!) and also has referred me to an ophthalmologist and booked me in for a CT scan with contrast as he wants to rule out anything 'sinister'. He has also told me to up my Pred by 5mg (after rapidly reducing to 10mg) as my shoulders and lower back/hips are really stiff and painful and to go straight to A&E if I have any more eye episodes or bad headaches/jaw pain etc. Oh and to resume taking the aspirin everyday which I had stopped when I started reducing and also heard it's pointless?

So I'm feeling a little bit encouraged by all the tests that someone is taking it seriously but also a bit confused with all the conflicting diagnoses. Particularly as my appointment with Dr Hughes was contradictory to everything I have learned here so far.

Was also mortified to admit my weight has ballooned and I now weigh more than my husband who is a strapping 6ft 4". Pathetically, this was the bit that made me teary, probably because he was sat next to me. I guess if you saw pictures of me from 6 months ago you may understand my vanity but I am just so uncomfortable as well and don't recognise the person in the mirror. Now I am on a lower dose of Pred and don't seem to have the all consuming ravenous appetite and insatiable sugar cravings I am going to concentrate on sorting my diet and cut out the sugar and carbs.

So not sure what to make of it all but a couple of amusing things to finish with, the Drs name is Dr Seymour and every time someone mentioned him I kept thinking of Seymour Butz and got the giggles, (apparently from The Simpsons my 14 year old has told me) but kept my juvenile mind amused. The other one was that I had to don the lovely backless gown for the X-ray...only due to my stiff shoulders and useless hands I couldn't do it up so had to get assistance from the nurse...avec spotty pred back, bum and back boobs...what's wrong with that? Well nothing until you're all finished and you have to take it off again! I forgot to ask her to undo it and had to walk out into the full waiting room to ask OH for help 😂 Seymour Butz was very apt!!

Any opinions, advice, general chit chat gratefully appreciated 💋

Tanya (AKA Trixiechamp) x

[PMRpro Ambassador]

Well at least you are getting a full MOT at the NHS's expense rather than yours!

The aspirin bit is still in the last recommendations - from 2010 and that is what most people are working on. The new ones aren't out yet - and nobody except us will read them anyway...

[piglette]

Hi Tanya, I have come to the conclusion that they have a tick off list and try each thing and if it does not work on to the next trial.

I had a CT scan with contrast media and everyone was waiting in their gowns and for some reason I did not have one, I just wore my normal clothes, goodness knows why. Probably the NHS had run out of gowns! Nice though. I love the way they use the expression to rule out anything sinister. I had a CT scan on chest, abdomen and pelvis. I am still not sure of the results.

[PMRpro Ambassador in reply to piglette]

I imagine they'd have told you if there was anything sinister...

OH just had a skin biopsy - "We'll ring you if there is anything nasty..." However - the GP had seen the report on the computer.

[piglette in reply to PMRpro]

I am not actually sure what this sinister thing is! The radiologist's report is pretty nebulous and does not really say anything, it is totally different to the X-rays I had of the same bits of me a few months ago. Perhaps I met a body snatcher. A sinister one.

[PMRpro Ambassador in reply to piglette]

Sure you are the subject of the report?

[piglette in reply to PMRpro]

Quite possible I am not, all the radiologist reports seem to be done abroad nowadays as the NHS is short of radiologists. The last one qualified in Baghdad.

[SheffieldJane]

I like your style Tanya! Don't despair you will get your old self back you'll see.

No wonder you are confused with all the conflicting medical opinion. Let us know how it goes.

Keep smiling they say laughter is the best medicine.💐

[Trixiechamp in reply to SheffieldJane]

Thank you, trying hard to smile (although find it hard with the hamster cheeks) 🐹😂

[Slosh in reply to Trixiechamp]

😂😂😂 yes - mine actually feel tight!

[Griggser]

Good luck with your PMR journey. Cutting out carbs and sugar has worked for me. I no longer get those cravings for sweet things and in 5 months have lost 2 stone 3lb without feeling hungry. It's not easy but I feel so much better that I'm sticking to it. Not having bread or pastry is tough but as I like to cook I've been able to make low carb dishes that have been really tasty. Of course it's more difficult if your partner still likes to have their potatoes, pasta, rice, bread, biscuits, cakes etc but it's worth sticking with it. At least I can have wine, whisky and pork scratchings !

[Slosh]

Interesting about the Jaw pain. I had terrible jaw pain about six weeks ago. Had gone away for a weekend - it turned out to be quite stressfull - I had to up my dose of Pred in the end. But never knew what the jaw pain was about. ???

[camerashy in reply to Slosh]

Hi Slosh

I also had jaw pain..so bad I could not eat anything so lost 1.5 kilo I still have jaw ach but not so bad..just when I try to chew anything..since taking the pred .I have regained the weight and am struggling against a ravenous appetite any0ne have any dietrey suggestions please??

[Slosh in reply to camerashy]

Yes the ravenous appetite is awful!

My jaw pain actually just came and went. I was thinking more heart as I had also had some chest pain and my legs were quite swollen. But then when I read this I wondered if it was PMR related.

[camerashy in reply to Slosh]

Hi jaw pain is one of the symptoms of GCA

[Slosh in reply to camerashy]

Thanks - yes i didn't know that or forgot which I'd very likely!!!

[PMRpro Ambassador in reply to camerashy]

Cut carbs - drastically. It has worked for a lot of us.

Pred increases your blood sugar level because it changes how your body processes carbs. It also causes your liver to release random spikes of glucose - and every time your BS level goes up it triggers insulin production to deal with it. The BS then often falls too low and your body craves carbs to get it back to where it should be. Rinse and repeat! Cut the carbs and that cuts the swings to a minimum. It is the insulin that makes your body store surplus glucose as fat in the usual places.

[camerashy in reply to PMRpro]

Very informative...thanks again