HopeSprings Posted January 4, 2012 Report Share Posted January 4, 2012 I'm trying - I really am. Lip biopsy was completely negative. Not Sjogrens. Still having some numbness from the biopsy, so I'm pretty much kicking myself right now. Please let this not be permanent. How far will I go for a diagnosis? Why can't I accept that I might never have an answer and accept that this is my life???? Just sad.... Quote Link to comment Share on other sites More sharing options...
corina Posted January 4, 2012 Report Share Posted January 4, 2012 naomi, i so understand how you feel. and i'm sorry you didn't get the answer(s) you're looking for. for me, i've been chasing doctors and diagnoses in the hope to find answers and a def cure for years until i came to the point where i could no longer do it. both physically and mentally it got the better of me. i then decided to get the best out of my situation, got as many "what helps" as needed, we made adjustments to our home and i focused on being the best mommy i could be (given the circumstances). i had already missed so much of my children growing up. i promised myself to go chase doctors and "cures" when they would be older and i would be (emotionally) up to it.and so i did and though it was really really hard my boys loved having their mommy waiting for them when they came back from school, we watched movies together and they were always there to help me with little things, where my husband took them to theme parcs, swimming, the cinema etc.when i came at the point they didn't need me as much anymore and i felt up to it (emotionally), i started searching for answers again and this time (years later = more knowledge) i had more success. i'm on meds that i hadn't tried before (i found them via a dinet member) and that worked pretty well for me. although not magically cured (i still have pots and it's problems) i can now go out for walks, drive, go swimming at rehab, do a little biking and have a much better quality of life.i understand the need to get your life back, but for me it worked better to stop all the doctors visit, research etc. as they didn't have any answers then and it was about to ruin me emotionally. i do know that i would have never ever given up on myself, as that's just not me. and though i am doing better now i still think that we haven't yet figured out where all this is coming from but one day i'll have the answer. until then i take it one step at a time.so, i don't say you should stop finding out what's going on, you do what you need to do. just letting you know that i fully understand and that maybe a time out can be helpful.corina Quote Link to comment Share on other sites More sharing options...
songcanary Posted January 4, 2012 Report Share Posted January 4, 2012 Naomi, I understand too. I just had a QSART and an AN reflex test and now the insurance company has stuck me with the cost of one of them because it was apparently 'not medically necessary'. Oh really? Then why did my EP order them? The result was abnormal to boot. May appeal it but that's not the point.This will be my last test for at least a long time. I don't know if I'll ever really know what is wrong in my wacky body. I'm fairly stable right now and I think I'll just let it be for awhile. I have come to terms with the fact that this IS my life. The old me is long gone, and it's not totally a bad thing. I better tolerate stress and am generally calmer and take life more easily. For me, those are big positive changes. I hope your lip and your spirit both heal soon! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 5, 2012 Author Report Share Posted January 5, 2012 Thanks for the encouragement and advice. This one seemed really plausible, though I knew it was a long shot. It's just hard not to get your hopes up each time. Not that you want a disease, but an answer which will hopefully lead to some sort of treatment. Corina, I appreciate what you said about your children and about being a Mom and that's 1/2 my motivation here. I want to be better now for them. I have two ideas left (literally TWO), but if those don't pan out I'm going to have to do some soul searching and find a way to accept this. Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 5, 2012 Report Share Posted January 5, 2012 Sending you hugs Naomi! Been there and done that...as far as getting my hopes up time after time that maybe THIS will be the doctor or test that gives me answers. Sorry you're doing thru this again. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 5, 2012 Report Share Posted January 5, 2012 So often Ive found no answers for my problems that i was doubtful and surprised when I got the positive Ank Spond diagnosis. Quote Link to comment Share on other sites More sharing options...
issie Posted January 5, 2012 Report Share Posted January 5, 2012 Corina, I've come to the same conclusion about searching for answers. There are still so many questions and no answers for them. I think science and medicine is going to have to continue to advance and one day there will be answers - but the variables are so spread out and not conclusive. So many of us have similiar issues, yet - so different at the same time. Are we low-flow, normal-flow, high NO, low NO. .....until we can get this figured out without question the treatments used may or may not work for us. One type has to be treated 180 degrees different than the other type.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 6, 2012 Report Share Posted January 6, 2012 Yeah potentially that is correct. Quote Link to comment Share on other sites More sharing options...
yogini Posted January 6, 2012 Report Share Posted January 6, 2012 I agree. When first sick I had a ton of tests and all came back normal other thn TTT. It is frustrating and not fair when you feel so sick but everything is normal on tests. We all want that aha moment where we pinpoint something that can be fixed. Unfortunatlely, dysautonomia usually doesnt work that way. For me, I realized it was much more productive focusing on trying treatments rather than figuring out what caused it. even the treatment process takes years and is ongoing. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted January 6, 2012 Report Share Posted January 6, 2012 I am sending virtual hug. My otolaryngologist at Cancer center today started me on Rx for the chronic laryngitis (very red/inflammed larynx/vocal cords) and membranes very dry (nose bleed earlier in morning/use humidifier, have the recent Rx for dry eyes and dry mouth, lips that look/literally peel off to edges of face constantly). The Rx he said was used to treat Sjorgrens (altho he was not diagnosing me with that, he said it increases moisture if you will in those/other places). I have very shiney hands/fingers/nails/toes that someone raised could possibly be Sjorgen's. I never even mentioned the problem with my lips since every doc/dentist I've asked, aside from suggesting chap stick says it's probably an autoimmune thing.Scarey thing is that the med lists most common side effects as: nausea, diarrhea, fainting, rapid/slow/irregular heart rhythm (which will just throw another monkey into the wrench with my dysautonomia, orthostatic hypotenstion, POTS, IBD/S, persistent nausea and GERD/gastritis. Quote Link to comment Share on other sites More sharing options...
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