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where do i start so many things going on at the moment.im getting infection after infection ulcers,abcesses,my hair is falling out, pains, aches, swollen joints,heartburn,cholestrol high and more things but cant remeber.i have no rheumy and gp does,nt know much about my illnesses i have sle,osteo,fibro,gastric reflux,suspected angina and so on.i have no faith at all in consultants at all,i got dx in january this year since then ive just got worse,im not on any medication at all im really at a lost.my last rheumy i sacked because he said i need to see heart doc,when i foned him to see when i was going to see heart doc and he told me that he never said it,my husband was with me and he told my rheumy that he was lying he did say it.oh my god what do i have to do to get treated ive done calm and ive done shouting but nothing is working.i need some 1 to help me and treat me so where do i go from here ive seen 3rheumys since january im at the end now and just feel like giving up.
so sorry people its sad and depressing but im so lost
take care all hope your having a better time them me


donna:sad: :sad: :sad:
 

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Hi Donna,
I am very sorry you are having such a nightmare of dealing with sle, etc.
Have you talked to anyone from the UK lupus group? I think that may be your solution to finding a rheumy you can work with. Or, have you tried to post down on the main page where there is a post to find a new rheumy?

The rheumy I am with, have been for 16 years, is the 4th rheumy I have seen. Hopefully your #4 will also be a keeper for you.

Have you been keeping a symptom journal? For many, this helps your doctor to find how to best treat you. Photos of any rashes are also a good thing. You may find it best to use a mini recorder when you go to the doctor. That way, you have it on tape/disc what is actually said.

I hope you are able to figure out how to best treat all your health challenges.
Sally
 

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Look Donna ive told you beofe to get a referal to dr ian bruce at MRI, he is alos northwest patron of Lupus uk...... get and do it NOW,


Lin take care x
 

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Hi Donna

You are having a real rough time at the moment, I sympathise, truly. Having multiple symptoms is a lot to deal with.

As has been said, you really must get a referral to a Rheumy, I see a suggestion has already been given. Remember it is your right, as an NHS patient to request and be referred to a consultant that specialises in conditions such as ours, no matter that you have seen several before IMHO, it is very important as a patient that we feel comfortable and trust a consultant we see.

Your GP may not specialise in Lupus or any condition, but he does know your medical history, and I am afraid it will sort of fall to you to push your case forward, easy said than done I know, when you are at end of your tether.

I would make another appointment with your GP soonest, book a double appointment if necessary, take any information you may have put together yourself, journal etc, list of symptoms, and do not leave until you have in place that referral. It might also help if you actually have a name of a consultant you wish to see, as has been given to you here.

For me at least, when I get proactive, I feel a sense of relief and achievement.

Good luck.
 

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Donna, I am very sorry you are so unwell and finding it hard to get expert help. If you have lost the recommendation lin gave you I am sure she wouldn't mind letting you have the details again - see the previous exchanges on Find a Doctor section. Did the last one you see not give you a follow up appointment ? Did he discharge you or have you discharged yourself ? "Sacking" a doctor is only a real option when you have private health care.

Your GP should be able to help with a number of the issues you mention.

I'm amazed he doesn't want to see you to discuss that high cholesterol level. He should be able to help with the reflux - there are medicines and coping strategies to reduce it even if the root cause is connective tissue disease.

He could also refer you for further investigation for that as well as any suspected heart problems. Certainly some attempt should be made to sort out all these infections at GP level. Our GPs usually have to deal with the problems that occur in between appointments which may not be lupus related and the consultant often asks the GP to organise other specialist appointments. You need to see your GP to discuss the rheumy situation tell him about the disagreement with the last fellow and find out what the consultant said in his last report. Ask him to refer you to the Manchester fellow in view of the unsatisfactory nature and failure to help of the previous appointments.

You could also stress that your gastric troubles and intolerance of the usual medicines mean that you really do need to get the best possible advice to get disease modifying treatment.

Lots of luck

Hugs
Clare
 

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Hi, Sorry you are having such a rough time. The others have given excellent advice. I know it is hard when you feel so ill, maybe you could show the posts to your hubby and he could help you? Let us know how you get on.

Take care

Deb
 

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Hi Donna and (((((((((hugs)))))))))

Sorry to hear that things are still so bad for you. I agree with Lin (you know I do, I think I kind of told you in chat the other day :lol:) so get down to it - appointment with Dr Bruce at the Manchester Royal!!! Go get that referral!!

Katharine
 

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Discussion Starter · #8 ·
thank you to all a power of strenth
lin can i self refer myself to dr bruce?
clare ive got to see gp on 28th of this month about cholestrol.
katharine :) yeah you told me in chat.
deb thanks to you to.
sally hoping to get more info.
karen ive wrote list upon list but dont really get anywhere i do get dx,s but no treatment


so im going to self refer to mri if i can but really guys im tired of trying what a battle the illnesses is just the start,the hardest part is getting the right treatment well i,ll keep you informed bye for now.
take care all.

donna
 

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Donna,

So sorry your having such a tough time of things right now. Wanted you to know your in my thoughts and please keep us posted as to how you get along. Sending Hugs to you and prayers that you get feeling better soon.
 

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Hi Donna,

I really can't add to the good advice other's have already given you. I just want to say I feel badly for you. I so hope you can get to feeling better soon.

I had cholesterol levels through the roof, and it went unchecked until fatty deposits were already built up in my arteries. My G.P. after testing informed me, that it was due to the lupus.

Also, I had made a couple of E.R. runs thinking I was having a heart attack, which I now realise was the lupus rearing it's ugly head.

I had terrible I.B.S. which they told me was Fibromyalgia at the time..

I guess the long point I am trying to make is..that It sounds like it is lupus effecting you Donna. I really do feel for you, as I know what all that feels like. I read your list, and I have had everyone of those at one time or another, and many all at the same time.

You might print this list off and take to your next dr, appt.

Please do push on..with your dr. I had to get down right aggressive before, I was taken seriously. I know..it is hard to be rude, but sometimes our very lives do depend on it.

Please get back to us..to let us know how your doing?

Thank You,
Sandy
 

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so sorry that you are having to deal with this at present I am sure once the medical profession get their act together and let you have the meds that you need you will see a big improvement in your well being.

take care
 

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All the best with your gp friday Donna, i didnt think you could off your own back, Tell your gp you want a second opinion, it is in your area anyway. Good luck and keep us informed x
 

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Donna,
PLEASE write down everything that is going on, a day or two before your appt. Then, give a copy to the doctor you are seeing this week. Make him go thru it with you.
Take a little tape recorder with you to record his responses to you. This will avoid any confusion later on.

As much as you are going thru, he MUST give you the referral you need. I feel for you, and am sorry you are having so many problems getting a referral.

Two days before your appt, get a good night sleep so you are not running on stressed out when you get to your appt. If you are like me, you won't sleep much the night before.....so plan ahead to get the rest you will need. Take naps if you can get them. My problem is that I don't sleep much during daylight hours. Oh well.

Good luck and let us know how this all works out.
Sally
 

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Hi again,

I just wanted to pick up on pink pearl's comment
Take a little tape recorder with you to record his responses to you. This will avoid any confusion later on.
That would be extremely badly received here if the doctor knew about it and would lead to very bad vibes. It also would have legal ramifications if he didn't know you were doing it so not something I'd suggest here (nor in Ireland) and I have a feeling the UK is the same.

What I do is write down anything relevant - clearly and in front of the doc - I've never had anyone find this weird, I just say that with my memory it's best if I do.

Just my opinion

Katharine
 

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Totally agree with Katharine regarding the tape recorder suggestion...would 100% NOT recommend this!

You should never record someones converstation without their prior knowledge and agreement...afterall we are not secret agents or the papparatzi!!!

I write down things during my appointments. I also ask Specialists to write down things for me before I leave (meds and when to take and how much, plus new illnesses being investigated etc), that way its in there handwritting and evidence of instructions.


((((Donna)))) Good luck with the appointment...let us know how it goes!
 

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I am NOT suggesting to take a recorder and not let the doctor know you are recording.
Here, I have put the recorder on the counter, telling the doctor that my memory is not what it once was. If the doctor disagreed, then no, don't do it, but if the doctor is agreeable, then it can avoid confusion later on.

I used the same recorder that I used at college to record lectures. It is small, has micro cassettes.
Never record against someone's wishes or without consent.
Perhaps this is a difference in doctors or the way they run their practice. I've not had a doctor have a problem with it... Nor, for those who have used it from our support groups, have their doctors objected. The recorder must be in view.
Sally
 

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Then, of course, Sally, if the doc is OK with it, it's another way of taking notes :)
 
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