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Hello everyone,

I've just been (almost ) rediagnosed with SLE. In the last few months, I've developed Raynauds and chronic kidney problems, so the hospital has re-done my bloods for the first time in years.
I volunteered for a study at St Thomas' years and years ago when I was an undergraduate in London. My bloods then indicated SLE and a letter was sent to my GP who ... totally ignored it, said there was no such thing as autoimmune disorders, "if it can't be treated, it doesn't exist" , yada yada.
I switched GPs but the letter didn't go with me. Since then I've had the usual run of problems I'm sure you all have (with the exception of the malar rash - I get sun-sensitive rosacia instead).
I guess that the symptoms have recently got worse - I have Raynaud's now and I'm starting to think the urology symptoms that were thought to be part of a back injury are SLE-related. I don't know whether I just have bad luck but my current GP wrote off 5 pretty consistent years of blood casts in my urine as "a woman thing". I got to see a rheumatologist last week who was the first doctor ever who has tried to connect all of my seemingly random symptoms. It's good to know there is hope (and common sense) out there. I'm guessing my situation isn't all that unusual - and that's actually quite scary! (BTW, I have three SLE cousins out of a possible four).

Anyway, hello again! This is my first use of a message board even though I'm a bit of a techno-geek. Hope I've done everything right!

Liso.
 

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Hi Liso

Welcome to the Forum. Congratulations on your first post! Dont worry - you did everything right. Shame the same couldnt have been said for your idiot GP's over the years :mad::mad: Im not big into the litigation culture but stories like yours make me want to sue the pants off dangerous idiots like that :mad:

Im sorry you are having serious kidney problems. Id say its almost a sure bet that they are SLE related - especially given your history of blood in the urine over the years. I just hope your kidneys can be helped at this stage and that any damage can be reversed. Thats just hard to believe - the bit about your GP and 'its a woman thing':mad::mad: Thats one dangerous doctor in my opinion.

Anyway, back to the present. Its great that you are finally getting some proper help and I hope that you can start treatment soon.

Its lovely to meet you and if you have any questions or need any advice for your upcoming appointments dont hesitate to ask. There is plenty of experience here amongst the members.

Take good care for now
Joan:rose:
 

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Hello Liso and welcome :)

Like Joan I am shocked at those GP statements :eek: and you having had that letter from St Thom's all those years ago :mad:

As your current GP is among those "silly statement" users may I suggest that you look for another ASAP? I know that's not always easy but it is very important to have a good GP on board. Sometimes you can even find a more sympathetic ear withtin the same practice. Honestly, I love my GP but some are just downright dangerous.

I'm sure that this has taught you to always have a copy of ALL your medical records, blood tests, letters in your own personal file.

Bye for now,
Katharine
 

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Hello Liso and Welcome, I can relate to your frustration with GP. I had the same GP from the time I was 13, till he retired when I turned 40. Looking back I always had problems with dry eyes, joint pain,several bouts of pleurisy(once the infection was so bad I developed purpura, I looked like one large bruise!)Then when I turned 48, I developed chest pains and went to ER. My hands were dark blue and the MD. on call said "How long have you had Raynauds? At last a name given to my red white and blue cold hands. Then finally I was tested for SLE and all tests came back positive. My journey was long,because back in the day the Doctors did not recognize or even heard of Lupus. Because of going without treatment for sooo long, I now have lung involvement, but I have found a wonderful Rhumy.
I am so thankful you finally found someone to connect the dots. I hope the outcome is good. Sending you Best Wishes, Rosie
 

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Hello Liso

I am shocked at your treatment that is terrible. I hope that your rheumy manages to get things sorted and soon. I believe there is quite a good hospital down your way with a lupus nurse office. Name of it escapes me at moment.

The others have given great advice. I am glad that you have found this site the people are so friendly and have so much knowledge. I hope that things improve for you soon.

Take care

Deb
 

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Hello Liso,
Just wanted to welcome you,and tell you that I hope things will improve for you at long last.
Don't worry about being a techno geek you have done just fine.
x lola
 

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Hi Liso,

:welcome: to the site.

I am glad you have finally found a rheumatologist. Most GP's have no clue when it comes to diagnosing Lupus. If it isn't a classic case they seem to just write it off as a possibility.

Good luck with your test results. Hopefully they will give a clue as to what is actually going on.

Take care,
Lazylegs
 

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I am glad for you that you have found a sane, logical doctor. My gp also tested for ana's ONLY, and since I have always been ana neg, they came back neg. He didn't pursue anything else, despite all the other symptoms I had. I also concur that a new doctor is in direct order. Ask your rheumy if there is a gp you can go to in your area. He will know who works well with him.

Good luck and glad you are at last getting on the right track.
Sally
 

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Hi Liso, why oh why are GPs so reluctant to admit they don't know what is going on; at least if they do that and get you referred instead you stand a chance of getting the treatment you need. Sounds like you are on the right path now though, so all the best and hope you get some relief soon.
Claire X
 

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Pollianna
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Aww Lisa, I can empathise, my Dr was a plonker too :hug: ten yrs of suffering and was told I ewas mental :rolleyes:

Now were here and we will hopefully get the right treatment. I'm a month into the plaquinel, what meds are you on to control the symptoms?

Weirdly enough I got the malar rash when first ill but not again for over 8yrs. I get it daily now . This thing shifts and changes so much. Are they on top of the kidney issue?
 

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Pollianna
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oooh, afterthought!! can you contact your last GP and request a copy of the origonal letter? It might give your present rheumy more confidence to diagnose
 

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The Other Illinois Tammy
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Liso,
Hi and welcome to the site. I am sorry that you have had all this trouble and it also sounds like you got the bottom of the bucket as far as doctors go. I have had my share of problems but to have a doctor say that if it can't be treated it is not a disease is really scary. I do hope to see you in the chat room soon. I hope you are doing well and feeling well.
 

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Discussion Starter #13
Thanks

Thank you all for the welcome and kind words. Although my doctors haven't been great, I also think this was my fault too. I think that, in the UK, because we aren't paying directly for a service, we sometimes forget that it *is* a service we pay for and that it is okay to tell GPs we would like to be referred.
The Hospital in Bath is the Royal National Hospital for Rheumatic Diseases (locally called the Mineral because it is where Victorians 'took the waters') and these people understand lupus. I'm hopeful I'll get the right treatment (or at least some treatment!) now.


Thanks again,
Liso
 

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Hi Lisa and welcome to a great place.

I am hopeful that you will get in to see a Lupus specialist and soon get some answers.

I like what pollianna said, call the GP and see if you can get the letter that may aide in a diagnosis.

I had blood work from years ago that showed a positive DRVVT blood test that helped my doctor with diagnosis. I had to go back to 2002 yet it really did come in to play upon diagnosis in 2008.

I wish you luck and please keep us posted. Join us in the chat room sometime. We have fun in there and you get to chat with people and get answers immediately.
 

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Discussion Starter #15
I like what pollianna said, call the GP and see if you can get the letter that may aide in a diagnosis.
The problem is the letter was more than 20 years ago! My old GP is long gone, and, in fact, the practice has disappeared too (amalgamated into a larger practise in a different place). I doubt that St Thomas' keep diagnoses from so long ago, so I'm really on my own here.

But still, I'm hopeful the Min will start me on my meds soon, and that my kidney problems have nothing to do with lupus. Okay, I'm not so hopeful on that last one...
 

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Wow, 20 years ago??? Your right, they probably do not have any record of that now. That is a shame but keep pressing forward until you get the help you need and deserve.

I do hope things improve for you.
 
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