[Parkesy]

Hi im 21 from Nottingham, I have had "suspected Lupus" for nearly 6 years, originally when I was in year 8 at secondary school it all started, then after about 3 years my symptoms cleared up and the NHS decided not to continue any tests.

Now after 2 1/2 years of been "clear" I fear that it has all started to come back as many of the same symptoms have started re-arising. However non of the doctors I visit will "waste time" doing any tests for lupus as they said the last tests they did came back "inconclusive" and that it is more likely than not that I dont have it. Not for want of trying to diagnose it after all I went for blood tests every year for 2 years with no joy!!

This however does nothing for my peace of mind after all I am un-diagnosed of any disease/infection that causes the problems I am having and nor the NHS or private doctors seem to be taking me seriously.

Anybody else have any of the same problems with doctors & diagnosis??

 

[Katharine]

Hello there and welcome

I think many many people here on this board can relate to your story. Most doctors know little or nothing about auto-immune diseases and it can be very hard even getting them to do the proper blood tests (in general only the rheumy will do ones that are specific enough) or refer you to a rheumatologist.

You haven't described the symptoms you are currently suffering from. I presume you have good reason to suspect lupus or something auto-immune. It might be worthwhile taking a look at the diagnostic criteria at the top of the "not yet diagnosed section" and seeing if anything fits.

I also presume that if you are posting in the "men with lupus section" you are a man? That might also explain why you are having difficulty being taken seriously as many doctors mistakenly believe that only women get lupus.

If you really can't find a GP to take you seriously enough for a referral to a rheumy, one option might be (if you can afford it) to see a specialist privately at least just to see where to go with this. You can good get recommendations for a lupus doc in your area in the find a doctor section here.

I hope that helps a little, feel free to ask questions, there are loads of experienced people here

Katharine

 

[Maia]

That is almost outrageous that they won't even retest you now because your last tests (2.5 years ago?) were inconclusive? Just what exactly do they mean by that? Borderline positive on some things maybe?

There are many paths to diagnosis, and unfortunately there are too many long and winding paths. If at all possible, obtain copies of past relevant blood tests, and take them with you to appointments. If you have skin rashes as part of your symptoms, consider seeing a dermatologist for a biopsy to possibly aid in diagnosis.

Good luck to you - I hope your symptoms ease soon either on their own or through diagnosis and treatment of whatever is causing it!

 

[cad]

Hi Parkesy and welcome,
So sorry you are having this nightmare.
All i can say is don't give up.
Can you not order some bloodtests from a private doc.
I f your symtoms persists and get worse then a doctor has to start taking it seriously and doing some in depth tests. If not i would say that you have every cause to go to your pct or gp practice manager and explain how unhappy you are.
You do have the right to request an ANA which could give an indication of connective tissue disease.

I hope everything works out for you

Good Luck

Cassie

 

[sheila t]

My heart goes out to you. I know myself how hard it is to get a dx. It took me a 11 years. I have been dx now 19 years, but it was a hard 11 years getting someone to take me serious. I was just so lucky in the end to find a good G.P that listened and even after my blood tests came back (normal) he continued to test, as he was sure due to my problems I had Lupus. My bloods came back in the end postive for lupus and a few other immune problems, please feel to e-mail me anytime if you want to chat.

Sheila

 

[Parkesy]

Symptoms

OK so still no joy my GP is an arrogant cow and is really starting to stress me out, so I have asked to see a dermatologist

My symptoms are quite long

1. Memory loss
2. Butterfly rash on my back
3. Lost 1 1/2 stone in weight in 6 weeks (I'm 5'10 & now weigh 8stone, had a 28" waist now 22")
4. Fatigue
5. Trouble Sleeping
6. Joint Ache
7. Muscle Ache
8. No appetite for food at all (I have to force myself to eat)
9. Mood swings

Although having requested to see a dermatologist they put me on a "waiting list" & thought I'd be happy with 6month wait! How wrong they are!

So I have booked in to see a dermatologist to get samples taken (again) from where the rash is, lets hope the private docs don't lose this one just like the NHS one does!

So frustrating I've requested copies of my medical records but they are extremely patchy & don't list half of the tests which I had carried out nor the fact that they ever took a biopsy!

Now I have my family worrying because of my weight loss & that just upsets me even more knowing that I dont know what I had & how bad the NHS truly is! they did ANA tests years ago but only wrote on my file borderline, however they were sure it was SLE that I had!

I just cant wait until the 24th when I get to see a dermatologist, even if it is hitting my bank account hard! lol! but for now all I can do is keep smiling!

 

[Joandublin]

Good for you Parkesy!

There is nothing as good as the feeling of taking back some power. I truly hope you can get some answers soon and most importantly get the appropriate treatment for whatever is going on healthwise.

Just a word of advice. Dont try and tell the dermy that you think you have Lupus. Docs dont like people to self diagnose (no matter how accurate you might be) and it often creates a dynamic between patient and doctor which can end up being unhelpful to you in the future. Just be honest and open about your symptoms.

Cool and steady and the very best of luck on the 24th! Let us know how it goes.

Take care
Joan:rose:

 

[Parkesy]

self diagnosis

I completely agree with you on the self diagnosis front,

I much prefer having the doctor work hisher little socks off to try & figure out what was wrong with you I think it's great, besides last person I plan on annoying is somebody who controls anything to do with my health!:rotfl:

But like I said until I know all I can do is be happy & tke it one day at a time! btw I love this forum its AMAZING!! wish I'd have found it 6yrs ago!!

 

[Joandublin]

besides last person I plan on annoying is somebody who controls anything to do with my health!:rotfl:

:lol::rotfl::lol::rotfl:

Can I use this for my signature! :rotfl:

Cheers
Joan:rose:

 

[Parkesy]

lol wel the truth is kinda funny! after all can you imagine annoying ur GP then having to go back for a needle, we all know the GP would make it as painful as **** for ya!