Lupus and getting a diagnosis

no.1swimmum · 26 September 2016 at 9:03AM

I am really struggling at the moment, (particularly this morning after a comment from a co-worker, telling me in a very loud voice did I know that I was going bald on top!!)

I have had lots of on going problems for a while now, but things got really bad at the beginning of last year when DH had a heart attack, at first I put it down to stress, but eventually GP did some bloods one being lupus, which was positive. I was referred to Guys and had another positive test, but all they keep telling me is that I am too old to suddenly develop lupus (i'm 51) and they were false positives, and have been treating me for osteoarthritis - pain meds are not helping at all, I have been awake since 3.30 this morning with the pain, and now the comments I am at the moment a blubbering mess. I am sorry. I just don't know how much longer I can continue in this pain, I don't go back to Guys until November....

I am reluctant to go back to my GP as last time I barely sat down before being told that I am under the hospital and they will not see me about my symptoms now. in 18 months Ive been to the hospital twice, and if the pain meds aren't working then what do I do. I am really sorry, I don't really know what anyone on here can do I just really needed to vent a bit.

.Gigolo_Aunt · 26 September 2016 at 10:48AM

Well, you've got a choice:

put up with the pain (not a good option by the sound of it)
buy yourself some co-codamol to be going on with and seek proper medical advice rather than on a forum
Phone the hospital and ask for your appointment to be moved forward
if the NHS won't help you, get a private appointment

Janey3 · 26 September 2016 at 10:55AM

I'm sorry you are suffering so. I would agree with the above poster, please contact the hospital and speak to someone there, your hospital specialist or doctor will have a secretary, ask to speak to her/him as first port of call.

A work colleague has lupus and know from her, how debilitating it is. As an aside, she was 50 when she was diagnosed.

no.1swimmum · 26 September 2016 at 11:03AM

Thanks for your replies, I should have said in my original post (but I was a bit upset and wound up when writing it) Have already had my appointment postponed by 6 weeks (really busy clinic), have rang them several times to be told that as I don't have lupus I am not considered a priority and only those patients have their appointments bought forward!!

I unfortunately can't take co-codamol/co-drydamol as they both give me vertigo like symptoms and make me sick.

I have made an appointment to see GP tomorrow, told the receptionist it was about chronic fatigue - not really stretching the truth too much I am going to ask if I can be referred to a different hospital for a second opinion as Guys seem to have made there minds up that its not lupus despite test results.

I hadn't really considered the private route I will discuss it with the doctor tomorrow morning, I have asked to see specific doctor as I find her easier to talk to, so hopefully she might help me.

Thanks

Janey3 · 26 September 2016 at 11:40AM

Good luck with your appointment, no1swimmum, good that you have an early appointment to see the Doc. I find it helps to write down all the questions I need to ask when there in case I forget something. Come back and let us know how it went.

Anoneemoose · 26 September 2016 at 1:11PM

Hi.

So sorry you are suffering. I have ME/CFS and Fibro and I think some of the symptoms can be similar - I know there are a few on my FB support group who have been tested for Lupus - some with positive results, I believe.

I have been unfortunate in some ways, yet fortunate in others. My GP is lacking, yet I have been referred and attend my local ME/CFS clinic, as well as just having my first appt at the pain clinic. My GP is like Jekyll and Hyde..so much so I am changing surgery, but have previously always had to take someone with me, and still had anxiety attacks in the waiting room - mainly because of the way he was with me.

If you are disatisfied with your treatment, you can always contact PALS...

http://www.nhs.uk/chq/pages/1082.aspx?CategoryID=68

They can act as a go between, I believe and deal with any complaints you have.

MonkeyDr · 26 September 2016 at 8:27PM

Hi OP

(I hope this doesn't constitute medical advice, I don't think it does)

I'm sorry to hear that things are tough. Of course I don't know about your case - and it would be inappropriate to discuss in this forum - but I would like to highlight that lupus sometimes can be very tricky to diagnose. There is no one diagnostic blood test (even the one with 'lupus' in the name does not mean that you have the disease.) I appreciate that it's unhelpful. You can google the diagnostic criteria.

So, expediting an appointment to (what sounds like) a lupus clinic may well not be the best thing for you, as the team there will be experts in lupus and not in other things.

Asking your GP to refer to someone else for a second opinion is fine, of course. Or indeed for other suggestions to manage your pain.

I am not sure what a PALS complaint would achieve at this time. The most productive way to complain about overly long waiting lists is lobby your MP and make sure you vote for whichever party promises more money to the NHS.

MD

theoretica · 26 September 2016 at 11:08PM

People diagnosed with lupus (and other conditions with similar symptoms) often have years of symptoms behind them. If 51 is 'too old' can you honestly point out how long ago you first started suffering from any of the symptoms?

jenniewb · 27 September 2016 at 1:02AM

OP, contact PALS, get someone to help you go back to your hospital Doctor (whom will be better informed than your GP). Don't let them stop fighting your case until you have something sorted that actually helps you feel better. A diagnosis will be part of the result as it is unlikely they'll offer you any medicines or treatment without you fulfilling a criteria (to which you will need a diagnosis).

Keep notes, dates and names...etc. PALS are there to help liaise and resolve issues between patient and the services they are using. They are there to help you.

no.1swimmum · 27 September 2016 at 9:35AM

Thank you all so much for your replies, I had another really bad night but that's the norm for me, I am always tired but wake up many times during the night due to the pain.

I spent the time making a list for the GP.

Looking back we can pin point symptoms right back to my mid twenties when I had chronic fatigue, chronic mouth ulcers, bald spots due to hair loss etc etc and possible even until I was 18, but no one ever connected them.

Although all these things will be in my notes I have made a detailed list for the GP.

OldMotherTucker · 28 September 2016 at 9:39AM

no.1swimmum wrote: »

Thank you all so much for your replies, I had another really bad night but that's the norm for me, I am always tired but wake up many times during the night due to the pain.

I spent the time making a list for the GP.

Looking back we can pin point symptoms right back to my mid twenties when I had chronic fatigue, chronic mouth ulcers, bald spots due to hair loss etc etc and possible even until I was 18, but no one ever connected them.

Although all these things will be in my notes I have made a detailed list for the GP.

Don't worry too much about the past - he's a GP not a forensic detective:rotfl: He can't treat symptoms that you've had in the past and he has no say in your diagnosis! He can perscribe you drugs, order some blood tests or refer you to someone else - You need to focus on walking out of the surgery with some immediate pain relief and an appointment to see him again in a week or two at the very least!

Be resolute! Good luck!!

Lupus and getting a diagnosis

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