As i am typing this i am shaking, dont know why, BUT lastnight while john was out about 9.30 i thought i had ear ache in my left ear. so alarm bells started, then i fell asleep and john woke me up at eleven oclock when he got in, off to bef to read, started sweating because i thought ear ache, got up at 3.30 and a pain in my head, but it went and i could not feel ear ache, but up at 6.30 now while typing and it feels like i have ear ache,
no twinges in head , no pain eye sight good, am i just panicking.
Just made lemon, manuka honey drink, throat does not feel bad, as i walking in a lot of wind ,sleet yesterday, is it this.
poor you, I am no expert but know how you feel as it is very frightening when you are first diagnosed and I think very easy to think you might be getting GCA, you really need to find someone else who lives in your area to reasure you, where in the country do you live? someone reading this might live close to you and be able to meet up and talk about it, it is a very lonely illness as most people have never heard of it and dont understand how you are feeling, keep your chin up and have faith, you will not die of it and that is a blessing so many people much worse than us. x
I would really love to introduce Margaret to my Doctor. I feel she would be able to force him into a retraining programme or to retire from medicine altogether so we can get a new one.
If I listed all the terrifying symptoms I have gone through over the past eighteen months from the first morning I awoke with a sudden onset of old age...feeling I was wearing a lead weighted diving suit and not being able to wash or brush my hair... to the awful day when my hair started to fall out in handfuls, the palpitations and feeling that my heart had stopped for two minutes....the prolific sweating that needed change of clothes and sheets more than once in 12 hours....I could go on but I am sure you are all aware of these and for me anyway, there is no sympathy from my Doctor or indeed any explanation. As for headaches I have had this one since Christmas and no way of getting rid of it without knocking myself out for 3 days with Tramadol....I can't take what the doc prescribed last week they make me sick! Actually an old pair of wooly earphones with ice in them is very effective and just fits over the achey part.. seems to last a good two hours after with relief too.
" anyway, there is no sympathy from my Doctor or indeed any explanation"
You know - any patient presenting with night sweats requiring changes of bed linen needs investigating for all sorts of nasty things.
Our joiner in Scotland was doing some work for me and mentioned the awful sweats that were driving his poor wife nuts as she washed 2 or 3 lots of sheets EVERY DAY. The GP claimed it was flu. I told him to go back and tell whoever he saw he wanted to be investigated properly not just fobbed off and I told him the things to say. I can't remember now whether it was a case of the different GP saw things a bit differently or whether he called the OOH people. Anyway - he was sent to the local hospital as an emergency.
Bless him, within a couple of hours he was in the isolation ward, all on his own and being barrier nursed, much to his alarm! The consultant arrived with umpteen students. Andy was being used as a teaching opportunity. He had a rare and very nasty bacterial infection and had it been ignored for much longer he would have been dead. No ifs or buts. He was in hospital for weeks - and came to see me to thank me for making him face up to the GP.
The most common reason for night sweats is actually cancer - and a GP can't do the requisite differential diagnosis. It is nothing short of medical negligence to ignore such symptoms and if I lived anywhere near you Christine I would come with you to your GP and tell him so.
You need to get to JR A&E - and once they have dx'd you properly you should make a formal complaint about your current GP.
That was last year Eileen...when he was pressing me to reduce Pred I had reduced down to five but was walking like Quasimodo... In August I came off altogether as he stopped the prescription. The sweats stopped by November but I was in a wheelchair... I went to see another doc at the practice... she told me I could not go back on the Prednisolone but I blew up and threatened her... she then put me back on the original dose with the reductions I specified. Within 2 days I was walking normally and back at work. She will no longer see me because I shouted at her and told her I would report her.
I stopped taking Omneprazole at Christmas... and whilst this was rather painful and uncomfortable to begin with I have worked it through and now get no night sweats or palpitations or a lot of other niggly things... I do have head sweats when I excert myself but believe these to be due to Prednisolone so don't worry too much. Thanks for thinking of me and yes, I would really appreciate a knowledgeable person to intervene if I go to GP again but I am sure things will get better if only more was known or published about this very debilitating condition that can affect anyone over 65 almost overnight! If I have anything significant happen I am going to call an ambulance and go to A+E because thats the only way I can get there and back again without taking out a morgage.
dont be too sure of that Christine, i am not so brave without Eileen backing me up, and i dont know what the doc will say when i go to see her next, not taking hubby he might have a fit, asking for blood test results, etc, we dont do that he would say, i am just bgetting around to talking about it to him, but he still will not read the book, keep tryinh is my mantra.lol
To be honest I got the feeling that this Doc was getting fed up with me because I went about once a month due to the confusion re the PMR I could not understand all the horrible things that were happening. He made me feel like a hypocondriac.... Even at Christmas when I had the worst bout of flue in my life lasting 5 weeks I did not go and see him because I felt so uncomfortable. Some years back I had Thyrotoxicosis and because of that I got a heart problem and had a stent put in... then we moved and were allocated this doctor who decided I had heart disease..... he treats me for that first on every ocassion... even though JR say I have nothing wrong with my heart apart from a stent but that is not an illness it was a cure for something eight years ago which I no longer have. Even if I go to A+E they monitor me for heart disease and not for what I go in for.... spent 12 hours on a monitor when I had a broken wrist 2 years ago before they ex-rayed me. Then sent me home at 2 am to come back next day for the plastering..... no heart problems noted whatsoever!
There is a LOT published about managing PMR. The problem is that too many GPs are too arrogant to accept an offer of information. They cannot know everything about everything - but the good ones know that.
Here is a link to two of the most recent UK publications, the links to them are via the penultimate and last links in the first post of this thread.
The first is by Quick and Kirwan and the second is a review by Mackie and Mallen (final link in that post and then towards the bottom of the page).
"he stopped the prescription" and "she told me I could not go back on the Prednisolone" - what appalling treatment. Stopping pred like that is downright dangerous and, forgive me being dense, but why not? If either my daughter or granddaughter were told that they would be dead by now. Words fail me.
Please Christine - call for an ambulance and get to JR. Do you have no half-decent neighbours who would help? In a situation like this if any of MY neighbours asked I'd have them there in a heartbeat. Though a hospital who sends a patient home at 2am should be reported too.
christine, i feel lucky as out of the two lady doctors i see one i am sure understands pmr and she has worked in a and e, when i showed her the list Eileen told me about reducing she was in agreement, now i dont know what will happen when i see the other doctor armed with the information, but she was the one who gave me the uk.patient site to use.I know they are under orders from our main doctor who i would not touch with a barge pole he is so arrogant, and i dont think he would have any sympthoy. The first doctor knows the stress i have been under since last year what with the cancer scare, etc and is really kind so hopefully i might be lucky, please do what Eileen says i know its hard, look at me dragged my hubby to a and e at eight oclock friday night he was in the middle of his tea!, but i was new at this and the doctor must have thought what a lunatic, but he was also a young kind man(bet he thought poor granny) better calm her down.
christine i have just read your aricle again where you threatened your doctor and have just laughed my head off, i know its not funny, but i was just picturing it, well done you.