Finally!!!

Hi Everyone,

I know I only post occasionally but I pop in quite regularly to see how you all are.

Well I have some news. Finally, finally (30 years later) have a firm diagnosis of what is going on.

I threw lupus into the ring with my gp a few weeks ago, and she threw back mixed connective tissue disease.

The catch is to prove it with an ANA blood test. First time round no luck, didn't register high enough, this week though, GOT IT.

So 30, to be precise 32, years later, I know what is going on!!!!!!!!!!!!!!!!!!!!!

The mctd fits like a glove. So amazing to connect all the aches and pains and KNOW why!!

No cure of course. Always has to be a catch doesn't there - but my goodness me, what a relief to finally know.

Once I get over the shock of it all, I am really going to reassess my life.

Which I should have done before, but of course didn't have the faith in myself to say "no, enough is enough, things have to change."

It is very strange.

To all of you here who are still on the mystery tour of what is going on - don't give up looking for answers and don't let yourself be pushed into what you don't want or can't handle as I have been over the years. Self doubt - how to turn a strong person into an idiot.

Love to you all

Marion

Not happy you have a disease, of course, but very happy you got your solid diagnosis Marion
and finally you can say to all those dumbkofps who ever doubted you all those years and told you "it's all in your head" -
- IN YOUR FACE, ... !!!

Maybe there is no cure, but I hope at least there is some treatment that can lessen the symptoms
and let you led a fairly normal life!



I will suggest of course mctd to my dr but I already know what her response will be - no, I don't have it.
Neither I will be sent for any tests, since the previous ANA came back normal. Twice.
My best bet is maybe in a few years I will have money again to go back to PL where I can pay myself for the tests.

However, you gave me hope, Marion!

Risa

I'm so glad you got answers Marion. I will ask my Dr about next visit, my mother always tested "inconclusive" for lupus yet it was obvious something was "wrong".

I worry about my sons. Since Jr High they have both had horrendous stretch marks on their shoulders, stomach, hips. My eldest also has migraines and back problems, (talk about mothers guilt!).

Thanks for filling us in.

Thanks for the update! Getting a name for what is going on does give us a sense of peace. When I was 36 (I am now 53.....as of today) I was in the hospital with acute pericarditis. My doc at that time was sure I would test positive for lupus - I thought he was wrong and we made a bet. 17 years later it looks like he will lose that bet. He tests me every once in a while for lupus but I am always negative. I have given up on the medical profession figuring it out in my lifetime and have gone ahead and decided for myself what is wrong. I think that I (and my brother and maybe my nephew) have an as yet undiscovered autoimmune or connective tissue disorder that I have named Old Weird Harold's Disease (after my father the first patient with this disorder). My doc believes in it and I have even written it on insurance forms.

Happy belated birthday, Jewishmother!!





On your birthday I wish you a miracle, which is being completely healthy, but if it's not quite possible then at least
getting a solid diagnosis just like Marion did!

Apart from luxurious, extravagant gifts, of course~ !

Risa

Thanks everyone,

Knew you would understand. Love the Harold's disease and a belated happy birthday JM.

I think the saga will continue for a while. Go tomorrow to doc to actually see the test results. Doc just rang the other day to say positive ana so will find out how in depth they are. Apparently once you test positive to ana they can then break that down into which ana. So don't know if that is done yet or whether I will have to wait.

Funny, I wonder if I would have bailed out on things like work earlier if I had known earlier. I know in the last five years I have been doing less and less round the house and garden to leave enough energy to work. As for social life, well what's that? At the moment even getting to work is mostly a no-go. Raises all sorts of questions as to which path I would have been taken.

Raises all sorts of questions as to which path I should take now. I think too much.

Thanks for being here Marion.