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Date: 16.01.2014
From: Rachael

Subject: Been to see Rheumy - gutted & can't stop crying

Went to see Rheumatoid today and I'm so confused & upset. When I went in November she said she was pretty certain I had I & that I would have a steroid injection that day to put me on until she started me on MTX today.

Forward to today, she examined hands, feet & hip joint, then said because:
A: There isn't much visible swelling
B: The steroid injection didn't offer any relief (she told me it was 50/50 that it would work)
C: My bloods were normal

That she THINKS I MIGHT have PSa but she isn't prepared to start me on MTX at the moment. She wants me to have more bloods and have a bone scan in a few weeks @ LG I.

So I'm left in constant pain, unable to walk correctly, eat properly, have a bath unaided or even cook a meal.And I'm, unable to be
parent to my kids and a wife. No pain relief and i have to go back to work soon.

I've gone from a diagnosis to her not being sure. She says it could be wear & tear or something that started in D and that I was very young (40) to start on MTX.

She has recommended Amitryptiline which I can't take because of other medication and she has given me an appointment for 6 months time saying if I get worse see my GP

Hence floods of tears and anxiety attack and kids not knowing what to do.

so so sorry for the long post.
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Date: 16.01.2014
From: Rosy

Subject: Re: Been to see Rheumy - gutted & can't stop crying

Go to your GP and insist, don't ask that you are re referred to another rheumatologist and that it is marked as urgent.
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Date: 16.01.2014
From: Emm

Subject: Re: Been to see Rheumy - gutted & can't stop crying

Oh Rachael, I really feel for you, reading your post.
Take Rosy's advice and DEMAND, sometimes we can be too polite!!

It is really hard for you, is anyone at hand to help with your kids sometimes.
Thinking of you. X
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Date: 16.01.2014
From: Rachael

Subject: Re: Been to see Rheumy - gutted & can't stop crying

I know this sounds stupid, but, demand what?
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Date: 16.01.2014
From: Colin W

Subject: Re: Been to see Rheumy - gutted & can't stop crying

so sorry for you , alot of us have been there at some point , you wait so long & just given a load of crap from these doctors

asked to be refered to another rheumatologist , tell your GP you cant go back to work without being given some drugs to control this , methotrexate would help with your skin problems as well which is so outrageous
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Date: 16.01.2014
From: Emm

Subject: Re: Been to see Rheumy - gutted & can't stop crying

Rachael, I meant demand to see another consultant.
Sorry if I confused you.
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Date: 16.01.2014
From: Rachael

Subject: Re: Been to see Rheumy - gutted & can't stop crying

I feel such an idiot. It's made me think it's all made up. I've come home and really really pushed myself. Now the pains excruciating.

Has anyone else had a bone scan?
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Date: 16.01.2014
From: Bev

Subject: Re: Been to see Rheumy - gutted & can't stop crying

You need a new rheumatologist, I have a friend with an 8 year old little boy who has been on Methotrexate since he was three.
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Date: 16.01.2014
From: Willis

Subject: Re: Been to see Rheumy - gutted & can't stop crying

I agree with everyone else you should go to gp and demand another appointment ASAP - there will be someone out there that can/ will help more
It's horrible to be left hanging on when in such pain. The only other thing you could do is if the pain gets so intolerable is to go to A & E
Hoping you get quick results
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Date: 16.01.2014
From: marlene

Subject: Re: Been to see Rheumy - gutted & can't stop crying

Hi Rachael, Big hugs. This is just not right as we all know on here. It takes so long to get the treatment you need. Chin up and it will get sorted. Keep knocking on the doors i.e Gp Hospital A&E until you are satisfied that you have all the meds you need. By the way I am sure you are a fab wife and mummy.
Take care and Good luck
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Date: 16.01.2014
From: LInda Bradley

Subject: Re: Been to see Rheumy - gutted & can't stop crying

Hi Rachael. I feel for you right now. Its disgusting the way your being treated. And I echo everything what everyone has said. I had a bone scan over 12 months ago, although there were 'hot spots' all over, the report said I had degenerative knees!! They are the least of my problems.
Take care and chin up, dont give up... hugs Linda xx
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Date: 16.01.2014
From: Rachael

Subject: Re: Been to see Rheumy - gutted & can't stop crying

I have nearly been desperate enough to go to A&E for the pain, but I'm not sure if they could do anything for me.

I'm just so confused. Even my daughter who was at the 1st app has said the consultant has gone back on what she said.

She seemed focused on the fact I should have swelling.

Has anyone else had a bone scan?

Will my Dr not agree with the consultant.

Thanks for the help and support by the way.
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Date: 16.01.2014
From: marlene

Subject: Re: Been to see Rheumy - gutted & can't stop crying

Hi Rachael I have had a bone scan it is nothing to worry about. I have had MRI and CT scans. At least once this is done you will get an answer.
I have OA and get hot swelling and a lot don't everyone is different. It took the scans to detect the problems I had presented a lot of RA symptoms. Take care and keep your chin up xx
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Date: 16.01.2014
From: Rachael

Subject: Re: Been to see Rheumy - gutted & can't stop crying

Here go the aching and shooting pains.

Don't think I'll be sleeping any time soon.
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Date: 16.01.2014
From: marlene

Subject: Re: Been to see Rheumy - gutted & can't stop crying

Oh Bless you Rachael have you got a hot water bottle? Lots of us have one as we find the heat helps. I really don't know what else to suggest.
I hope you get help soon. If you get too bad go to A&E and I am sure they will help you.
Big Hug xx
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Date: 16.01.2014
From: Rachael

Subject: Re: Been to see Rheumy - gutted & can't stop crying

Thank you all.

I'm going to try and see my GP first thing.
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Date: 17.01.2014
From: Chrissie

Subject: Re: Been to see Rheumy - gutted & can't stop crying

Hi Rachael, Sorry to hear that you are suffering. I have PSA and had a bone scan about three and a half years ago. Then it only showed hot spots in my ankles and wrists, neither of which caused me any pain. My worst areas were hands and knees. Unfortunately most joints are now affected. I don't suffer from obvious swelling at all, but many aches and pains.I also had a steroid injection recently and had no relief either! I have had three in total, 1 worked, 2 didn't. I agree with everybody else that you need to demand to see another consultant, it's so wrong that you are left to suffer. Good luck xx
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Date: 17.01.2014
From: Rachael

Subject: Re: Been to see Rheumy - gutted & can't stop crying

Thank you all so much for your non-judgemental supportive replies.

I saw the GP this morning and she's asked for a urgent 2nd opinion on, signed me off for 2 months & put me on Tremadoc 4 X daily and neurontin instead of amitryptiline
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Date: 18.01.2014
From: helen

Subject: Re: Been to see Rheumy - gutted & can't stop crying

Hello Rachael. Just catching up on posts. I too have PSA iv had bone scans as methotrexate wasn't working they wanted to see if I had something else going on. I didn't. My hands wrist fingers feet are so painful sometimes swollen sometimes not. Everything is slow winded I think in this department but I suppose theyv gotta get it right. But that doesn't help you 6mths is a blimming long time to wait. I hope your new painkillers help.
Take care. Helen. Xx
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