Lupus Diagnosis

[Sandra]

Just returned from two days of specialist visits and finally I have been officially diagnosed with Lupus, as well as the sjs, Addison's and hypotyroid. It's kind of put me in a funny mind-set. Lupus has been suspect for years now but my rhuemy just couldn't or wouldn't confirm it until now. So I feel no different than yesterday but it is different.
Having some neurology app and tests done as my respirologist needs to figure out why my muscles are not working as good as they should. My breathing has gotten more difficult and short but although the tests show that I have normal breathing results it showed also that the muscles that are to help me breath are not performing as they should. I assured him that my breathing muscles were not the only muscles that work the way they should!
So my question for any lupus folks how long must one endure more and more tests for an illness that is progressive and uncurable anyway? Seems like I am just there every other week to be monitored which is good for a diagnosis but after a diagnosis I kind of feel like now that I know what it is I'll let you know when the wheels completely  come off....
Any opinions? thanks Sandra

[Chickpea]

Hi Sandra

You must be exhausted after two days of tests.  I think we can all recognise the feeling that you describe so well:  'I feel no different than yesterday but it is different.'  Putting a name to something should make it easier to deal with, somehow containable, but it doesn't always work that way.

Monitoring probably feels like a waste of time right now but it isn't just for diagnosis but also to keep an eye on treatment options.  As you say, Lupus is progressive as SjS is for many people.  There are no cures for either condition.  But there are treatments and that's what you need to find out more about.  And have faith in.

From what you say about your breathing it sounds as though your body is working very hard to function as 'normally' as possible.  If you've got normal breathing results with muscles which aren't performing as they should it sounds as though they're working beyond capacity.  That would explain some of the fatigue.  Sorry but I can't remember whether you're on Prednisolone?  If not, is it an option now?  If you are, are they considering increasing the dose?

Thinking of you - Chickpea

[Scottietottie]

Hi Sandra 

I guess maybe there's some kind of treatment if they can figure out exactly what the problem is. They have to do the tests to come up with the right treatment option.

I think having tests and waiting for results is a horrible time because everything feels as though its 'on hold'.  I think you are probably stunned by the new label. You know you're no different - but that's not how it feels. You have a bit of the grief process to go through again. Give yourself some time.

As far as I know lupus and SjS are treated very similarly. They will want to identify where the lupus is active though.

Take care - Scottie 

[chrisgirl]

I am sorry you have to go thru more testing.  I hope they can find the cause to your muscle trouble and do something about it.  Do you mind me asking how they finally concluded lupus with you?  I am still in Dx limbo, and my bloodwork came back normal except low platelet count, so the rheumy repeated it along with another test.  I read about the platelets and test and found out they are markers for Lupus.  Will get results tomorrow.  Good luck to you!
Christy

[Sandra]

Well i have been on a replacement dose only  of prednisone since diagnosed with Addison'd in 1989, only doubling in a crisis like stress or acute illness. I take my thyroid medicine and a electolite med which is another kind of steroid I think for the mineral balancing that my adrenal gland can't do. I take 10 mg of amitriptyline for help with pain and a better nights sleep' So I have been extremely lucky and conscious of how to keep this balancing act kind of balanced for the most part.
Now however after speaking with my rhuemy last NOv and the respirologist today I think things are becoming more  stubborn. Now it's about treatment options for lungs that are struggleing.

Maybe "added prednisone" he says I'm thinking not on your Nellie... I just can't handle that stuff too many other miseries weight gain, the withdraw, that's just not an option for me I have been on pred too long and and know too much, then there is the big guns like chemo drugs well they are not fun either and some of the good folks on this board have been on them and i find they still struggle, perhaps not as much as they would be without them??? the tird option I am very excited about and it is very new...stem cell therapy, I mean the stem cell from my own body, I have read lots and know of two persons in my community that have been in a similar situatation actually worse and have chosen stem cell treatment and are excited and pleased and have had some good results...

I see my rheumey and endocrinologist on June 24 and that will be a big discussion.....of coarse I could always coose to do nothing and deal the way I have been dealing and just wait until I am in a state where I have nothing to lose by any of the above.... and maybe that day will never even come...who knows

As for the diagnosis I am unsure right now where the descision of the diagnosis of Lupus came from, just as I have been unsure of why it wasn't done way back in 2004 when they first told me of the possibility and suspected it as the underlying cause to my symptoms.....I will find out in June I am sure from my rheumy the details, Chrisgirl I hope all the best for you, but above all no matter what no matter who, believe in yourself and do exactly what you need to feel the best you can, any diagnosis' that's going to be made will be made in good time, take care Sandra

[Chickpea]

Hi Sandra

Stem cell therapy from your own stem cells sounds fascinating - can you tell us more?

It doesn't sound as though Prednisolone is going to be much help for you, or at least you'd pay a high price.  You're asking the right questions about immunosuppressants/chemo.  As one of the 'good folks' here who's about to start her second type - first having failed to help - I agree that I'm still struggling although maybe not as much as without them.  But who knows?  You can't exactly do a controlled experiment with yourself!

The June discussion with your specialists will be interesting.  Somehow I don't think you'll end up doing nothing - you don't sound like that sort of person.

Take care - Chickpea

[Sandra]

The stem cell idea that I have is one where the stem cells are extracted from one's own body and then minipulated or cleaned and then reinjected back into the body.
I had written a post earlier if you use the search and just search "stem cells" you can read the thread which includes a much more detailed link. thanks Sandra

[chrisgirl]

Thanks Sandra.  Good luck with your June appt. and let us know how it goes.  The stem cell treatment sounds like a great idea.  I remember reading about a lady who had it done when she was very sick with Schleroderma (sp?) and it was successful.  I think it was a life or death situation for her and the treatment was risky, but it turned out well.  Hopefully more and more reasearch into this will make it a possibility for many.
Christy