No name disease
 

I am so freaking frustrated today....My ANA came back highly + again. 1:640 at this lab...it is a different lab. I usually run 1:1280 at the usual lab. I anticipate the next one will be that. ENA came back negative. Grrrrr. I am some cr@p unusual antibody that is not showing up in routine tests. They are sending me numbers so I can draw my own conclusions. If the rnp come back anywhere near the cutoff...well then I proclaim this MCTD, as one of my docs says. RNP is running close to cut off, as of last ENA.... We will see.

I dont know whether to push for all the odd antibodies, or if that makes a difference in treatment or not. I wonder if I need a 'bigger gun' added to the IVIG.

IVIG it doesn't seem to be helping enough, as far as I know, and now I have developed just about ALL the autoimmune symptoms, including rash. Fatigue is awful. My C4 is still low. I have a slightly elevated serum billi which makes me nervous, since primary billiary cirrhosis is an autoimmune disease with sicca, as well.

My neuropathy is still cruising on full speed.

It is bad too know too much.:( I don't even WANT another ANA or ENA....ANA is high, period. That is ALL we know, and it is too high to be a normal variant.

I am going to go pout and make some soap. This cr@p condition is defying any label other than autoimmune.

I'm sorry it's so frustrating and disheartening, cy. Why do we have to have something they don't understand and can't fix? Well, at least we understand how you feel.:hug:

I think I understand some of your frustration... I got the "we don't know what your antibody is but we are always finding new methods to test for those unknown antibodies..." talk at my neurologist last time. Like that is suppose to make me feel so much better about things.

I am sorry you are feeling frustrated...:hug:

Mere

I hate to see this happening to you....:( it's a helpless feeling to feel so 'in tune' with someone, yet not have a clue what to say when it is needed the most....

Your posts, humor and wit have been better than any medicine in a bottle IMO.....and I'm certain others will agree.
And when I see what pain and struggles you actually face beneath the surface.....well....it's simply heartbreaking.

You endow the true epitome of strength to be able to paint such a colourful world in spite of this miserable reality....and for what it's worth....you are an inspiration like none other...

I, for one, simply want to send you a special 'thank you'.....just for being you, and for sharing your world with us.
Though our battles are unique to each of us, we are still in this together.....

Prayers straight from the heart are being sent your way.....

Your Friend
Rae
:icon_cry:

It's good to have all the wonderful e-friends here on the forum....

Honestly, my humor came with my disease....hmm, I wonder if there is an auto-antibody for that bequeathed the sense of humor to me??:p

Really, it's laugh or die.

It has been speculated--
 

--that those with autoimmune tendencies have them because they are inherited on alleles that somehow confer some sort of survivial advantage; otherwise, before the addent of modern methods of immunosuppression, the tendency towardds autoimmunity would have been "selected out" a long time ago and there'd be relatively few people with tendency now.

Wonder what your survivial advantage is--nice to think it would be humor. :p

BTW, did you ever post a full list of all the autoantibodies and such you've ever been tested for? I keep wondering if there are some in the Liza Jane or other lists that may have been missed that might provide some more clues.

So sorry to hear of your recent troubles.
Wish I could be of more help, but I'm just a bump on the log
when it comes to your particular situation. Just have no knowlwdge.
Hang in there, here's hoping things'll get better with
the coming of the warmer weather.

AWWWWW, thank you guys. This is the best forum. It has the smartest, kindest, bestest people.:grouphug: Even with all our differences.

I will dig thru what I have on antibodies, but I know I need to ask the neuro which ones he all did. ENA is pretty basic. I had the gliadin one, and I was tested for Fabry's. I think it is worth redoing all the neuronal antibodies since they were done 6 years ago, and I was negative on ANA then....and my neuro system is what is being attacked the most. I could give any one with MS a run for their money symptom-wise and then some. Yes, LizaJane's sheets are great. I have them printed out.

I am not sure what survival advantage humor has. I am convinced that RLS was the 'gift' of shamans and night watchmen for the tribes...obviously those people were up looking at stars and watching out for safety. All I need is a rune drum and bells on my toes.

Having a robust immune system makes sense for some one of northern, and even far northern ancestry. I think I need to eat more fish and reindeer meat. Ok fish...no reindeer. I bought a cheap Swedish cookbook on an adventure to the Chicago IKEA with my daughter....eel meat, elk meat etc. recipes! Ewww. I guess it is good they made use of their environment. Thank goodness for the dessert section! Swedish pancakes, mmmm. I get my counter and sink installed today, and I actually want to cook....I hope I have the energy!

Well, thanks to all of you for support....and over the next few months, I will make a push on all the antibodies....I don't think I can swallow the unidentified antibody thing until I know what all they tested for...recently too.

A lot of treatment for these autoimmune things are similar.....I do plan on having them consider primary billiary cirrhosis, which was not considered....even if it is not a solitary disease with me, it seems worth considering given every medication I take that is metabolized by the liver, seems to not sit well with me. I am sure the IVIG is addressing things, but it either needs to be more frequent or have an add on drug....or maybe this is the best I can be right now. Who knows.

I did make two wonderful batches of soap yesterday, lavender organic shampoo bar and goat's milk-oatmeal complexion soap. (smells good enough to eat). The shampoo bars are wonderful and lather up with great bubbles! They really work! Now to fix up my basement work room, lol. Right now it is me, the spiders and spam....and last year's pickles.:D