[Maz0252]

Hi All

Sorry to be so miserable but I feel so fed up now.

After displaying loads of symptoms of lupus, including family history of auto-immune my GP sent me to a rheummy. The first guy I saw took a fairly good history and sent me off for loads of blood tests and xrays. He then told me that when I came back in December I would see a different consultant.

I got a letter asking me to come in yesterday so in I duly went. The new consultant was very off hand. Didn't ask me anything about my symptoms and how I was at the moment. Told me all tests had come back normal and said my anti-dna & ana was negative. He then said my ESR was raised but blamed it on my smoking. He then told me it wasn't lupus I didn't display the symptoms (how little had he read my notes!) and that he was discharging me. I understandably got a bit tearful and he bit my head off saying it was surely a good thing. I told him that I'm back to square one and still not getting treated. I asked him how he would feel to be exhausted all the time and in pain. He then said I had fibromyalgia and he would still discharge me and get my gp to run the ana tests etc in 6 - 9 months. He's also given me a prescription for amitryptaline which I know is for depression and he claims that I can use it as a painkiller.

My next question is - what do I do next? How do I get a referral to Dr D'Cruz? I feel so fed up and upset. Thought maybe I'd finally got a breakthrough in getting the right treatment.

 

[Clare.T]

Hello Maz

How very disappointing :sad: Even if you do not in fact have lupus or similar that consultation was not correctly conducted. I suppose he will be sending the blood test results to your GP who I hope is still as sympathetic as he was - that is a great help to getting further treatment. It is very hard to get diagnosed without a positive ANA especially if you have never had one. There has to be a compelling body of evidence and a highly experienced clinician.

You want to check out which tests were in fact done.

It might be possible to get referred elsewhere in your area - I suggest you contact Birdie who is active in the Norfolk LupusUK Branch and will know what's what locally if anybody does.
You need a referral from your GP to go to St Thomas on NHS.There's about 2.5 month wait I think. I have never been sure if a referral is needed to go privately to the London Lupus Centre where the wait is a couple of weeks depending who you want to see. I wouldn't necessarily be fixed on Dr D Cruz, as I know they are all Dr Hughes trained. There's only one I myself would not want to see at St Thomas'.

Perhaps your GP could help with better NSAIDs. He just might be willing to let you have a short course of Prednisone.

However, the amitryptiline is one of the standard treatments for fibro so the rheumy's claim is correct. There are a number of threads about it on the Medications sections and of course you can post about it there. By the way did he do the pressure point test for the fibro diagnosis?
I do know that symptoms can be very similar to connective tissue disease.

All the best and please keep in touch to let us know how you get on and for further help

Hugs
Clare

 

[Maz0252]

Hi Clare

Thanks for your support. I will certainly talk to my GP again.

In answer to your question he did do the pressure point test but I only had pain in my shoulders when he did it. Definitely not the 11 out of 18 places I'm supposed to.

I guess I'm just a bit confused and frustrated. I just want the correct diagnosis and if it is fibro then that's fine but I don't think it is and my gut feeling has never been wrong before.

I may look into a referral for St Thomas's but I think I need a bit of time out now from Doctors. I feel sick of the sight of them at the moment and going through everything - as I'm sure you all do.

Best wishes to everyone

 

[Clare.T]

Yes, the time out idea is very sensible. Have a break and regroup.
Remember though that Christmas puts at least a two week hold on everything so if you think you want to get going in the New Year don't leave the planning too late.

I wasn't doubting that you have lupus - I wouldn't know- especially having no idea what your symptoms are I wouldn't even have an opinion. I was thinking more that if the amitryptilline helps it might help sort out what's fibro, if you do have fibro, and what's not.

Cheers
Clare

 

[Maz0252]

I wasn't doubting that you have lupus - I wouldn't know- especially having no idea what your symptoms are I wouldn't even have an opinion. I was thinking more that if the amitryptilline helps it might help sort out what's fibro, if you do have fibro, and what's not.

Cheers
Clare

Hi Clare

I know you weren't doubting it - sometimes my written word can come out a bit sharp. Sorry!!! I may give the amitryptilline a go, as you say - it'll help perhaps in ruling out things.

Take care

Maz

:hugbetter:

 

[cemc]

London Lupus Clinic

If you did want to see someone at the London Lupus Clinic privately, then you can get an appointment without a referral. There are one or two doctors who will see people without referrals. You just need to phone up and talk to the receptionist. Out of interest, I paid £190 for the initial appointment, just less than £400 for the full set of lupus blood tests, and another £190 for a shorter second appointment to go over the results. Of course it doesn't cost anything to get GP to refer you to the NHS St Thomas's, though the wait for an appointment may be a bit longer.

 

[heavens_child0101]

You CAN use amitriptyline for pain control. The dosage is much lower than the dosage used for depression. I have interstitial cystitis (a chronic bladder condition) and I take amitriptyline 25mg a day for pain control. I haven't had my rheumy appt yet so I can't help with the rest of it. I hope you get some answers soon!

 

[Raglet]

Ditto try the amiptyp - it is specific for fibro, and is not just a pain killer. It will improve the quality of your sleep, which generally improves the fibro. It may help you to read up about fibro, as fibro is often a sleep disorder as the person is not reaching the correct level of sleep even though they feel like they sleep all the time because they are so tired.

Amitryp is also good for pain - it interfers with the transmission of the pain signal. It won't do anything to blood work, so if you do turn out to have lupus down the line then it will not supress any supporting blood work.

feel better soon

raglet

 

[Maz0252]

Thank you everyone for your really kind thoughts and helpful suggestions. It really is appreciated.

I'm going to see my GP in the next couple of weeks and chew things over with him and see what he thinks. He has been really supportive up til now, so I hope it continues. I'm going to read up a bit more on fibromyalgia, but so far what I've read doesn't relate to me - but I'll keep an open mind and keep digging.

Take care and thank you!

 

[LolaLola]

Dear Maz,
Wishing you all the best.
I am afraid this Rheumy has just confirmed what we often say here, that not all Rheumys are knowledgeable re. Lupus.
Ami. taken at the low doses to promote sleep is very useful, dfon't worry he is not sneakily trying to treat you for Depression. Enjoy your bit of time out, and come up fighting!
x Lola