[julsie]

I just wanted to rant a bit if that's okay.
After being dismissed at last appointment and being told that I am unlikely to have an autoimmune problem and that my symptoms are probably due to depression,I am becoming more worried about my 12 year old son.
Not only does he always have mouth ulcers,today he mentioned that his soft palate was hurting.On examination with a torch,I could see another large ulcer on the roof of his mouth.My husband took him to the G.P on Mon.and he sent my son away with mouthwash.Over the last week he has had hip pain and his possible(say that because I am trying not to diagnose!)raynaud's is getting worse.Everything seems to point to Lupus,although I obviously don't wish it.In the meantime I am concerned at the damage that may be being done to mine and my son's body whilst waiting for a diagnosis.Since yesterday ,a small ringworm type lesion has appeared on my trunk.I really feel like shouting at the doctors,but I always restrain myself as I know I am not a doctor or consultant.
I am still waiting for results from St.Thomas's.In the meantime,although I agreed to trying antidpressants last Friday my G.p ,who has been pushing for this,still has not written a prescription what is going on?:hissy: sorry for that,made me feel a bit better though,
Julsie

 

[julsie]

and another thing!the consultant said that some of my symptoms don't fit lupus,ie diarrhoea(she said you don't get that with lupus),and yet you don't have to look far to see that it can be part of it
http://www.uklupus.co.uk/gastro.html rant..rant
julsie

 

[sam101360]

If you have a rash...here's the thing to do...Take a snap (photo) of the rash (for the GP in case its gone by the time you see him again), and then run...to a Dermotologist and ask for a biopsy to determine if it could be Lupus.

I got my DX from a skin rash, which I thought was ringworm, as I never thought I was sick....

Stephanie

 

[LolaLola]

Hello Julsie,
Rant away! I hope you feel better for it. Just a thought sometimes Dentists are more sympathetic re. mouth ulcers.
x Lola

I will cheer you up, I took my photo for my Blue Badge renewal today. Hate having photo done. I was feeling quite well and thought I looked it until I saw the photo. I had four attempts and they were all awful! I look as if I need the Badge anyway!

 

[marymackay]

sorry times

Hi Julsie
sorry things are still not too good on your way to d/x. I know it is frustrating for us, and that we have to be assertive in our own bodies. Over the many years I've had so many unbelievable problems, over this last year, and with so much available on this site and others I'm now able to be more patient, and if necessary move onto more openminded health professionals.
I'm sure you are worried about the possibility of the genetic side of the autoimmune system, :worried: and are looking carefully at problems your son presents.
I too have been looking at this problem in my huge extended family, but it is hard to even warn others, as most of us have never even seen or heard of lupus, particularly where I live.
At least you are now aware, and we quickly learn to educate ourselves for further possibilities. Hoping you will get the answers you need:wink2:
Cheers from mary

 

[halfpintfl]

Hi Julsie, Wow, you certainly have a right to rant, and I am glad that you came here to do it. With all that is going on with your body, and having to wonder, question, and worry about your son, I would be screaming my head off. Yes, you do need an antidepressant, don't be Mrs.Nice and wait till he gets around to it, remind him to write it then and there,just
try to do it with a smile. (ha ha )

 

[julsie]

Ha!ha! you're right halfpint!whenever I speak to this doc now I try to sound my cheeriest and feel like I have to have a smile pinned to my face.
It's not that I'm against antidepressants,it's his motive for prescribing them that gets me down,ie to treat hypochondriasis! he thinks.
I'm actually looking forward to trying them and seeing if they do help with the joint pain and dizziness,two things put down to depression,but I can't help feeling like I've given in.
Stephanie, I did try to see a dermatologist ,but by the time the referral went through,6 weeks later,my rash had cleared.Sooo frustrating!I have,however,thought of going to London next time it's bad and lying on the floor of the lupus clinic:lol:
Thanks Mary.
Lola,If your photo is bad enough to scare people I'm glad it's traffic wardens who see it!
Don't worry I always look awful in photos too!
Julsie