[Taree]

Hi all. I was diagnoses with DLE 16 years ago by a doctor who managed not only to scare me to tears but ended our second consultation with: "Unfortunately you fall into the 10 - 20% category of people who will most likely develop SLE, there's nothing I can do for you. Come back to me when you're ready to go on steroids."
He gave me no indication as to the symptoms to look out for so for years I've been convinced that I'm lazy from my fatigue, a hypocondriac with all my headaches and stomach problems and losing my mind from anxiety episodes, amongst all the other symptoms.

I am hoping to confirm my diagnosis asap but in the meantime am so happy to finally feel that I am not on a steady decline to insanity!

 

[LolaLola]

Hello there,
What awful treatment you have had so far.
I hope things get better, it maybe that you will manage just with Plaquenil and avoid steroids. It can take a while for meds. to work but at least you now know what is what.
x Lola

 

[Katharine]

Hello Taree and welcome!!

That doctor sounds awful I presume that you are not going to go back and see the same one!

As Lola said there are plenty of options other than steroids, the first being plaquenil if you are not already on it.

It really makes me mad to hear of docs that have done such things. I'm sure you could have been treated ages ago to ease all those other symptoms that you have had if you hadn't been so put off!

bye for now,
Katharine

 

[Taree]

Thanks so much Lola. I was 15 when I was diagnosed so I did take it a bit hard. I'm just glad to understand more about whats happening to my body and mind. Luckily I'm an optimist which was very confusing for me when I felt depressed but at least now I know I'm not looney!
x Taree x

 

[Taree]

Hi Katharine. I've often wondered about that doc... what might have happened in his life to make him so cold? I feel blessed that I have a variety of options on treatments to enrich my life and a little sorry for him as there's no known cure for rudeness!

x Keeping the smile alive!x

 

[mysharonna]

Hi Taree and welcome!

So glad that awful doctor has not given you a negative outlook on life. Sometimes one wonders what makes them so bitter and cold or are they just born that way...

When my husband was 18, a doctor told him there was no reason to quit smoking or drinking beer with his buddies because he was going to die young anyway..so why bother!

How do they get a medical license is a good question!

Anyhow, glad you have found the silver lining in this loopy illness.

Take care!
Sharon

 

[Maia]

Well, to give him some credit... a lot has changed in 16 years with respect to treatment for SLE. Perhaps that doctor was old and not keeping up with the current research of the time too.

Needless to say, the options for treatment today are much greater than 16 years ago and it is quite likely if you are diagnosed then treatment will help greatly. What treatment did you get for your DLE?

 

[marymackay]

modern updates on lupus

Hi Taree and Welcome
I am sorry that you came across such a doctor at your time of d/x years ago , and, as you said, you are an optimistic person. This has sought you to seek answers at this time. As the other posts have said to you, times they are a-changing.
This site is so supportive, in our moderators, and those longterm d/x experienced lupus sufferers. However,there are pockets of specialists and GPS who know not much about our lupus symptoms:worried: . I am still seeking a firmer d/x than 'lupus like symptoms', and will see 4 specialists this month, probably more, re thrombosis, kidney and sinus longterm problems, and have had to travel big distances to do so.
It is our optimistic outlook, and our search for information and answers that will keep us going when the going gets tough. All the best for the future:wink2:

 

[Taree]

Thank you all so much!

Mysharonna... By golly, to encourage an 18yr old to party it up? Perhaps he was trying to be a cool doc.
My optimism has been renew'd (It's easier now that I understand more about what's happening to me) but I still have my moments when I need to find a quiet place and remind myself that I'm lucky enough not to be in constant pain and also fortunate to have access to a computer and people like yourself. Imagine all those out there who still don't know their status and have no one to talk to.

Maia... My mind is truly boggled by the variety of treatment options and I'm looking forward to finding the one most suitable for me. My doc basically did a biopsy, showed me worst case scenario pics - they are still clearly imprinted in my brain - gave me a slap on the wrist for being sunburnt, (I used to work on the beach) and told me to go back for steroids later. No meds for the DLE.

Marymackay... My limbo will have to continue for a little bit longer... I'm not on a medical aid. I'm doing what I can tho with changes to my lifestyle, luckily they're not too drastic and the net has been an incredible source of info!

Maybe I don't give the people around me enough credit in understanding so I don't talk about my condition. It really is a comfort to chat to people who can relate. Thank you!!!!! Hope you all have a fab day as you've already made mine!

 

[Taree]

Good luck with the specialists Mary, may they be sensitive, caring and understanding of your needs! Please keep me updated on your progress, it can't be easy running around looking for answers!
X T X

 

[seashell]

Taree,
I like that you see the funny side of your dr being a ignorant prat! I have come across a few of those to.

I wish you all the best in getting some help asap and hopefully you can go on a milder medication like plaqunil.

Good Luck and welcome to the site

Shell xo

 

[Taree]

Ta Shell!

Just received your post now! I'm clearly a bit doff, still finding my way round the forum.:wink2:

I have often been told that I don't take anything seriously because I joke about everything! My motto is: "It's better to laugh than to cry!" Not always easy but I suppose we all deal with things differently.:lol:

Ta for the support, hope you're feeling strong today!