Never a days illness, now this!!

Dublin Ireland

Well done and you will love Antigua. Check the time difference as you need to adjust your steroid intake time.

I am no mathematician but somebody will be along who is.

Thanks Mrs K...I had not even thought about how the time difference would interfere with the steroids :roll: . At present I take my tablets about 8.30 am and Antigua are 4 hours behind us, so do you suggest taking them at 12.30 when away? All advice welcome and hope I don't get stopped by the drug squad at the airport :lol: . I know it is a few weeks until I go but as the weather has got a lot cooler here in the last week I am looking forward to a bit of sun.

To MargaretAnn & Jim...hope things are getting a bit easier fo you and that the steroids are helping.

Best wishes to all, Pauline.

Hi Everyone,, its been a trying 2 weeks,, jim just doesnt know where he is,, i thought when jim went back 2 docterts that the docter would increase his steriods, but b4 that could happen he got a phone call from his docter, he said that his blood teststhat were taken when he was at the specilist has come back its not showing anything ,his last insurance line was 4 polymyalgia rheumatica now his new one says neck and shoulder pain [ back 2 the begining] he now has 2 wait on an other appt with the specialist been warned it could be a long wait,the docter is weaning jim off the steriods and he is in agony. im sure they have it wrong, he has all the symtoms of polymyalgia rheumatica, and no one is listening, if it isint this what else could it b?im writing this just now and jim is shivering with the cold, he is still up, he cant sleep so if jim is told that its something else, do i stop posting on this web site be cause it is mabey something else, and when he gets a defintaly diagnosed as something else where does he and i go 4 suIpport. I feel i know all u guy.. So i am so so sorry if we have wasted your time i feel that i have you were there for me from the very begining,, and now he might not have this condition could he have two things wrong with him.. his work is going crazy now its back 2 neck pain ect and they are not happy and jim is worried sick whats going 2 happen now, i dont knowthis is why its taking me so long in posting got 2 go now thanks MARGARETANN:? God Bless You All

Oh MargaretAnn & Jim,

I wish I could be beside you to give you both a great big hug..it really sounds like you both need one .

There are others who contribute to this site who have never had raised markers in their blood tests. My own are pretty much back to normal now, but that does not mean that I have no pain...this morning my neck and shoulders were so stiff I could hardly move and certainly could not have driven a car or done any work.

It must be so difficult for Jim to have the added pressure from his work, as the extra stress will not help him in his recovery.Is there any possibility that you could get an earlier appointment with the consultant if you went privately? I know it is expensive here in Ireland (about 180 euro)and I don't know what they charge in scotland, but it might be something to consider to try and speed up some better treatment.

I am sure the other ladies will be posting aswell to offer their advice and support.

Keep on posting, this site has been a great support to me and we are all in this together.

very best wishes to you both. Pauline

Hallo again MargaretAnn and Jim Why are you being treated so callously by your doctor? I would be jumping up and down by now if I had been fobbed off like that. Having once seen the rheumatologist you should be able to go back to him/her without a long wait.

When a yuong docto at our surgery saw me ( usual doctor was away ) she was very keen for me to have a hospital appointment so that, as she said, I woul be in the system and able to bypass the usual 6 week wait.

If I were you I would ring and ask to speak to the Consultant's secretary and press for a quick appointment. I wonder has your GP consulted with the specialist or is he just reducing the steroids off his own bat. Perhaps he is like Bob the Builder's GP who wont prescribe steroids. You are entitled to ask to see your notes. You are also entitled to expect your Doctor to be on your side. Does he have any idea of Jim's distress, both physical and mental. Anxiety is not good at the best of times and Jim certainly doesn't need it now.

I feel so indignant for you both . You are entitled to expect better.

Hello Margaretann and Jim

If I remember correctly, this is history repeating itself in your case.

If Jim's pain was yet again definitely very much improved on the steroids, you now need to by-pass your GP and get back to that consultant asap either through his secretary or privately.

In spite of negative blood test results for PMR, the consultant must be aware that there are many sufferers of PMR who do not have raised blood test markers. As you know, you have heard from a few such sufferers on this forum who are being treated successfully with the correct steroid dose. Certainly, your GP is not aware of this fact and from what you have said he won't accept being made aware either.

I really do feel exasperated on your behalf and, like many others I'm sure, wish that I could do something more positive to help but I'm afraid it's down to you to put your foot down and get the correct diagnosis and treatment that Jim is entitled to. [b:6107e82183]The bottom line is that Jim can still have PMR with negative blood test markers and should be treated accordingly[/b:6107e82183].

Wishing you all the very best.

MrsO

[b:6107e82183][/b:6107e82183]

Hi again,

I repeat - I have NEVER, EVER had raised markers of any sort in 5 years, in fact the ESR is extremely low for anyone never mind for a pushing 60-year old. The only relief I have had from the pain has been from steroids - even if it isn't PMR if Jim is getting considerable relief from the steroids he shouldn't be taken off them until they can come up with another idea of what he has. :roll:

There are other GPs and I'd be looking for one who will listen and discuss what to do. And I would be ringing the consultant's secretary asking for an early appointment - the GP does not have sole perogative now you have a contact with the consultant. And quiet insistence on being heard is the way to go - do not be fobbed off.

I believe that the main reason for the \"it burns out in a couple of years\" and \"young people don't get this\" is because they try to fob off the difficult, aka \"not typical\", cases and they go away and suffer in silence at home. There are a lot of people out there who do not look like the textbook. Probably the majority. Medics always have a problem with statistics and \"normal distributions\"!! :lol:

Good luck,

EileenH

Hi MargaretAnn and Jim,

I'm absolutely agreeing with everyone who has posted. So frustrated with the way you're being treated :x . My bloods markers weren't raised, the Doc was confused and referred me to the specialist. As I was in so much pain and was securely fixed to the bed for half the day I splashed out on a private appointment. Best thing I ever did, the Consultant did all the bloods again with the same result. But as she said 'If it smells like, looks like and tastes like something' then it usually is!! She used steroids as a diagnosis tool and the result was amazing. She said she often has PMR sufferers in without any bloods results to back up a diagnosis. Oh dear you two, I do hope you get something sorted out soon. The very first thing I would do is dump your GP! Then I'd phone Jim's specialist's secretary (etc. etc. all been said before!!). Mine will always see me or phone me if I ask. Good luck and very best wishes.

Lizzie Ellen

Hi everyone hope u are all well, i dont know where to start,i typed a large post a few days ago but before i could submitit i must have touched some key that i dont know and i lost the lot, it was so frustrating, so here i am again. :? well jims appointment came through and its for 21st oct, i telephoned them trying to get an earlier date but the next one avalable was the end off november, so had to accept the oct appointment.im trying to explain all that has happened since my last post, but my head is in a muzzle just now, all mixed up, basic ly jim is has had his steriods cut down to 5mg which dont even touch him, as u know the rhumtoligst[ wrong spelling ] is wanting to see him again as the bloods came back and the specilists no longer believes he has polymyalgia rheumatica, basic ly hes back 2 square one, well at least thats how he feels hes been off his work for nearly 5 months and hes no futher forward, he is now for the first time in his life on anti depressents,, the gp thinks it could possibly have rhumtoid athritis, this has gone through all my side off the family and i have never seen these symtoms, i have been convinc ed all along he has poly rheumatica,he has all the symtoms off poly/rheu, so what now if he has this Athritis,, i have watched my 2 aunts suffer from this and its not pretty/could this be whats wrong with him?i dont know all i know this is going to take a long time to get over this mentally he is a total changed man , and iff he does have rhu/athritis i wont b able 2 use ure site as this is only for poly/rheu sufferes i feel that u are all my friends and u have helped me through this,and i have wasted all ure time \" sorry \" so this will b the begining off another illness where do i go for the supourt that u have given us i feel that weve 2 start all over again but without u guys and we probilly need you more now when he gets his diagnoses.., thanks for listening to all my moans and groans and i will let u know the outcome, and i will allways be remembered as the person that couldnt spell he he,, must shoot off now but like i said i will be in touch thanks again,, and God Bless all of you MARGARETANN XX

Hi everone its MARGARETANN here ive posted but it wont let me log in whatever its cause i dont know so im posted as a guest hope u get my posting ok

MARGARETANN

Hello Margaret Ann

Sorry to hear things arent going well for you and Jim

He does need to see the Rheumatologist again to get a proper diagnosis and also the Rheumatologist will be used to seeing people with PMR who dont have raised blood levels I the 1st time around was one of them and I know Lizzie Ellen was another and possibly Eileen so it is still possible its PMR

Dont worry about the anti depressents a lot of people are given them now on a short term basis and anything that helps you relax if you have pain might help

IF it is Arthritis I believe drugs have improved a lot recently so until you get a diagnosis there isnt a lot of point in doing anything bujt I am sure there must be a forum on this site for RA

One thing you can do is phone the Consultants Secretary and say when Jims appointment is and say if there is a cancellation before you would be very grateful to take it My sister in law who has to see Consultants reguarly has a lot of success with appointments this way !!

Best wishes to you both

Mrs G

Hallo MargaretAnn,

I'm sorry to read that you are no futher forward and do sympathise with the misery that Jim is feeling. It does seem to take an age to get dianoses with so many conditions and those of us lucky enough to have doctors who have got it right sooner rather than later should thank our Guardian Angels ( or whoever ). Mind you, even with a quick correct diagnosis there are still hurdles and grey days and doubts and impatience but there are the other kinds of days, too and I hope these come you way soon. Just don't ever think that life will never change. I have been there and I do know that it DOES change. But it's a see-saw so we have to guard againt being TOO optimistic as well.

Not sure whether that's any help but it is my experience.

Don't worry about the spelling; you come over fine . As for rheumatoid arthritis, everyone shortens it to R.A. anyway. My neighbour and friend has had it for more than ten years and, as Mrs. G has said the drugs do seem to be pretty effective these days. My friend has just returned from a trip the Orkneyes ( that doesn't look right but you know where I mean ) where she was able to do walks and boat trips and came back exhausred but very glad she went.

Ther is a R.A. forum on here. Not so extensive as the PMR/GCA but there are sure to be helpful folks there if that is where you need to be.

Keep coming back, anyway. As you say, we all feel like friends and want to know how you get on.

Best wi BettyEshes

Just to mention something I have said somewhere else: there is a blog site called rawarrior run by a young American woman who has RA. She was diagnosed as a teenager I think and has devoted a lot of time to researching her disease and has now set up a blog to communicate her knowledge. Whilst the visitors here probably don't have RA, PMR can be mistaken for it in the diagnostic process and vice versa and I was amazed at some of the information I found there which applies to us too or provides suggestions for dealing with the problems.

I found it originally via a blog site called rheumablog (who has lovely pictures of California as a bonus!) and by looking at either of these blogs you will find links to other sites of information. rawarrior, for example, has a lot of info about methotrexate which has been a topic here. Other blogs talk about people's personal experiences dealing with their disease and how to cope with the pain and fatigue - just as we have.

In the early stages of either disease no-one really knows what they are being faced with, after all, how many of us still have sceptical doctors, and there are some people who are diagnosed with PMR or something else first and later it turns out to be late-onset RA. I have this suspicion that there are very narrow dividing lines between what form of the autoimmune disease we develop. Early diagnosis of RA nowadays leads to aggressive early treatment with drugs that change the course of the disease and this prevents many of the horror stories we know from yesteryear. It is still a nasty disease - but does at least have very effective treatments for it. And has a lot in commom with our own disease.

So - for more info, and some enjoyable reading in fact, go and google!!!

EileenH

Hi everyone how are you all [its jim here margaretanns better half] my appointment is comming up soon and i dont know what im going in to as you know from margaretanns postings they no longer think its polymyalgia rheumatica its worrying to what it could be and could i have two things the matter with me at the same time, and if i do will they see that? or do they just see the other ailment and my p/my go on unnoticed, i am so mixed up because i have all the symtoms. and of coarse i worry its not something else more serious, i darent say the word but what if it is ,god i am so worried. it makes a change to see postings from us in daylight he he,, usualy as you know margaretann posts in the we small hours,,.she dosnt sleep so good,. im usually sleeping when she posts. she has been a brick,, allways telling me to think positive, but she hasnt posted for a while because like me she wants to find out whats, really wrong with me. we are both in limbo here not knowing what way to turn or frightend to post here because its probally not poly/myalgia, and this is the site for that ailment only, anyway have to go now see you all later thanks

Hallo there, Jim and welcome back.

[quote:a51375dce5]frightend to post here because its probally not poly/myalgia, and this is the site for that ailment only, [/quote:a51375dce5]

I don't think we have the Stasi monitoring us on here so don't worry about that. We all feel as though we know you and we all want to know how you get on. Remember, what you have to say may well help someone else so you don't have to have a guilty conscience.

Can you have more than one illness at the same time? You bet you can and any doctor worth his/her salt would take that into account. For your part it is very important that you tell the people treating you everything. What may look trivial to you may be the missing piece of information that is needed to make a diagnosis.

It would ( I am not going to say might ) it WOULD be a good idea to take time to write the story of the last weeks/months. It doesn't have to be great literature, just something to jog your memory.

Look after your other half. As you say, she is a brick.

Good luck and keep in touch. BettyE