Thank you all for your encouragement and caring and understanding

[Hali12]

So here is what happened once I got to ER. So I had my son drive me to there I was not in shape or form to drive. Not surprised. I got wheelchaired in. Explain the reason for me being there that was at yesterday morning at 10:30. That’s where you give them your name dob and reason. Thats step one. Next at that time 10:30. There were only 3-4 people waiting. I thought nothing of it. Saying to myself that cool. I’m not going to waiting that long because they wheeled me right to the triage area where they took my vitals. But no blood work. So after that they told me. They were going to wheel me back to the waiting. And someone will come and get you as soon as we get a room for. Again I thought nothing of it. And said ok. To make this excruciating 😖 and painful waiting period in the waiting room for nearly 5hrs later once I made a commotion. Demanding answers as to why patients that came after me were going into the rooms. Most of them were able to walk. I WAS SOOOO 😡 😡. Knowing that I’m having SEVERE HEADACHE AND PAIN STOOTING down my arms. I WAITED Patiently. I demanded a charge nurse whom did not come me until I wheeled myself back up to the triage desk and DEMANDED ANSWER. So all she could reply to is that it is out of her hand. But we are trying our best. And she is the charge nurse. Then another patient went up and asked the same thing. She was there the same time as I was. But she was able to walk. And finally that she had then came out to the waiting room trying to explain the situation. Which please excuse my language was a bunch of BS**** Now I peed off. Finally after all that 3:30 pm they called my name and wheeled me in. So that’s my main reason for NOT GOING TO THE ER. I hope you guys understand now. How I hate going. Anyway by 8:30-9:00 pm after trying all sorts of meds which had no did nothing but put me to sleep. I finally said listen I’m not going to leave until we get to the bottom of this. So they finally agreed and admitted me last night all my blood work came back normal and the ct scan was a little confusing. So once I went to my room upstairs they still were scratching their head. So after explains multiple times what going on. When they took my blood work again. They that I have ready for this 🥁 roll please it’s either migraine and/or lymes disease so they put me on antibiotics and/or MS. So this morning I’m hopeful to see neurologist and hopeful to see rheumatologist. Let’s see what happens today. So far that it is where I stand. Fill u guys in with the rest later info. PLEASE PRAY FOR ME THAT THEY HAVE ANSWERS FOR ME. I WILL KEEP YOU GUYS UPDATED. ADAIN THANK YOU ALL FOR YOU KIND WORDS AND NOT TELLING ME TO GET OUT OF THIS GROUP. I FEEL LIKE TOU GUYS ARE A FAMILY WHO UNDERSTANDS WHAT IM GOING THRU. THAY’s all for now. I’m getting very tired. Now

[Hidden]

Wow! Not a great experience, but not unusual. I spent over 12 hours in A&E was then told it was a migraine and told to see my GP if not gone in 7 days. It wasn't and when I went to GP she sent me back to A&E where I waited another 6 hours! They finally diagnosed PMR& GCA in the end, but it was a nightmare.

Well... I am so happy you are there and you are being assessed. I'm happy too about the neurologist and rheumatologist. Don't forget to tell them about the doses of Pred and the fact that you stopped the Pred cold turkey! So did they officially rule out GCA? Was that just because of the bloods?

Hang in there! Get some rest. We are all with you!!!!!

[Hali12 in reply to Hidden]

Yes it was in my blood. I don’t ever remember that I was bit but again I don’t remember a lot of thing lately.

[Hidden in reply to Hali12]

Hmmmmm, I have always had either normal or near normal CRP and ESR... As Snazzy says, Lymes sounds a bit random unless you spend a lot of time in the woods/grassy areas? Do you have any strange, round, red rashes on your body?

[Hali12 in reply to Hidden]

No and the only they did was a esr no crp

[Hali12 in reply to Hali12]

No rash on any part of body.

[SnazzyD]

Oh my oh my! Sadly a number on here have had similar experience. Why did they not go with the GCA diagnosis? Many, including me, have normal bloods with it. A wild stab at Lymes sounds just as strange or was there something in your bloods to indicate it?

[TooSore in reply to SnazzyD]

In this area of the US (northeast) they run a lymes test on everyone with unexplained symptoms. Ticks are very prevalent and you don't always get the rash.

[PMRpro Ambassador in reply to TooSore]

Or if you did may not have noticed it...

[Grants148]

Dear Hali,l do understand why you were so reluctant to go to ER,they really should have seen you urgently,to keep you waiting so long must have been an awful ordeal for you. Please let us know how you are and l hope and pray that you will get some answers from the neurologist.This forum has been a great help for me,it is the best place to go when you need to tell someone how you are feeling,because we are all exsperiencing the various symptoms of PMR and GCA.It does not matter if you find you have some other illness,just let us know how you are and l wish you well again before too long xx.

[Hidden]

What a day! I am hoping that things move forward and well done for standing your ground. At the end of the day you just need to know what's happening to you and get treatment and support. Stay in touch Best wishes.

[Grants148]

Sorry for the spelling mistake,must be the brain fog.....

[CT-5012]

What a dreadful day you had. Good to know you are at last having your illness investigated. All good wishes and 💐 .

[DorsetLady PMRGCAuk volunteer]

Hi Hali12

What a nightmare- but good for standing your ground - although patients really shouldn’t be put in that situation.

Hopefully you will get some sensible answers soon.

Good luck.

[SheffieldJane]

Well done for making a stand! Albeit from a wheelchair. I hope and pray your persistence pays off. Lymes Disease does have symptoms in common with PMR. At one stage I thought I had it from a tick bite in Australia.

I hope the registrar is aware that bloods can appear normal and you still can have PMR/GCA!!!

Keep as chipper as you sound and keep your “ family” posted. X

[Pongo13]

Praying for you and sending virtual hugs.

[shella]

What a nightmare - poor thing - you always need someone with you to fight your corner. This should not be the norm!!!!

Wishing you good luck with everything.... we are all here for you .....🙋

[Hidden]

I do seem to remember someone on the forum last year finally getting a diagnosis of Lyme disease. The problem is it can take a long time from the bite until symptoms show. Quite often people don't realise they have been bitten by a tick. Whatever it is you need to know.

healthunlocked.com/pmrgcauk...

[Mstiles]

Hali how horrible for you! They do know you were on prednisone and stopped it cold turkey don’t they? Are you in the US? Good for you for being demanding! Even Harder to do do from a wheelchair with an excruciating headache! Glad your son went with you.

[Stella3]

I so sorry for your awful experience. I had violent headaches, jaw pain and double vision and my CRP was normal. A friend (who is a doctor) suggested GCA and they did the biopsy (either side of the temple area of the head) and it was GCA. I had had PMR and that had not been diagnosed. Pain in the wrists, shoulders etc. Has anyone suggested doing the biopsy for GCA? I do hope this gets worked out. You should never stop Prednisone cold turkey. Always very gradually decrease it.