View Full Version : Good news/bad news
03-02-2009, 08:22 AM
Sorry I haven't posted in a while had a lot of things going on in the good ole noggin :). Anyways GOOD news the Rheumy ruled out Lupus and the ANA isa negative this time. YAY!
Bad news..they have no clue what I could have I have SCL 70 antibodies which means could be systemic sclerosis (scleroderma) been reading on that extremely scary stuff mortality rate within 5 years. blah blah blah...ALL the things you don't need to read about when not sure and still scared. Rheumy didn't mention concerns about the SCL 70 still not seeing many symptoms to back it up. They did sleep study to rule out sleep apnea..no news yet but most likely not since I slept like a baby all night (hehe almost strangled myself with all the cords). Neuro next week to rule out "who knows what".... then if everything seems fine there we will start with the poking and pinching again to figure out what is wrong. This is the first time I've decided to post have been a lil confused and maybe a bit depressed lately..although the 12 inches and counting of snow coming down isn't helping. :) I should move to California LOL!
03-02-2009, 09:09 AM
So happy to hear you don't have Lupus, but share your frustration in not knowing what's wrong. Hopefully, the neuro will be able to offer some insight. Is the neuro you're seeing a sleep specialist or "general" neuro? I only ask because, like attorneys, if your neuro is a sleep specialist, they might not be the most familiar with latest trends, developments treatment, etc.that a general practice neuro might be.
Like you, I did not have many symptoms of Lupus (not the obvious ones anyway) and was rather suprised at the diagnosis. Once I was diagnosed with SLE and Sjogren's things made a lot more sense, like my tummy issues, depression, dry mouth and SORE feet. I just wasn't putting it all together (subconciuosly fearing I'd be viewed as a hypochondriac). I've reviewed/summarized enough medical records to realize what a hypo is and I didn't want to become a card carrying member of that club.
I understand that many Californians are leaving the state due to an unemployment rate exceeding 10 percent, but we gladly welcome newcomers (especially nice ones)!
sick n tired
03-02-2009, 09:35 AM
Hey I understand that frustration...like bonus mom until lately I didn't have organ involvement and was also surprised with the dx...maybe you will have a mild case if any of scleroderma...that is a hope...of course, not having it is a good hope too
03-02-2009, 02:49 PM
Oh good news its not Lupus yet i feel the fright with the unknown. Please know im thinking of you and hope we can all ease your frustration and worries a little.
03-02-2009, 03:15 PM
I am glad that you do not have Lupus. Although, the suspicion of scleroderma is not one that you'd like to have either. It is one (of many) of the sister diseases; auto-immune disorders and, as you've discovered, can have its own complications that can alter your life. I hope that you find, after all the poking and prodding, that you DO NOT have any serious or chronic illness. But, whatever is decided, we are always here for you.
Peace and Blessings
03-02-2009, 04:15 PM
just like everyone before me, congrats on ruling out lupus.....however, so sorry that the searching process has to begin again. I wish you the best, and hope you will stay with us....
06-10-2009, 11:00 AM
Hello--my sister also has a positive scl-70 and previously had a positive ana test as well. They said they suspect scleroderma; however she does not have any skin issues at all or the changes in color on the hands. She does have joint pains in her foot and wrist, but other than that feels pretty good everyday. I am just curious if you ever got a dignosis??
06-11-2009, 12:43 PM
Glad to hear you don't have Lupus! Hopefully you will not have scleroderma either. Not knowing is scary as your mind has thoughts swimming around in it as you wait. Waiting sucks and not knowing sucks as well. I can't imagine being in the cold with snow...We californias only visit the snow not function and have to work in it. Cali is cool but due to ecomony/jobs/ just everything we are struggling and the only good thing right about now is the prospect of the Lakers winning a championship...IF you like the Lakers. Just trying to throw a positive spin on everything.
I do hope you get the answers you want and need asap. I lift you up in prayer!
06-11-2009, 01:47 PM
Glad you don't have lupus. It is worrisome not knowing for sure what is ailing you. I hope the Drs. find out real soon and that it isn't serious.