Autoimmune neuropathy
 

Okay. In autoimmune neuropathies where different blood yet can be done.
Can the Emg/ ncv and skin biopsy be negative.
But positive in blood test.
My doctors have never done antibodies for neuropathy test.

I was going thru Athena lab catalog and want to get those done.

Mrs d you are right it can be more than one thing. And who knows for the last 12 years another thing added to the mix. Like I know flu shot made whatever it was worse so perhaps toxic to the mix!

Keep in mind that...
 

key damages mite not show up for a while.
Be patient and be persistent! Also? CONSISTENT! Document the hows whats and nots of your 'progress' [or not].... It could be key to the whole thing.
It took me a year to get my first diagnosis-Autoimmune neuopathy, followed shortly by cancer, then autoimmune thyroid ...later a couple of others?
Keep faith in yourself, seek the best testing and treatments you can when you can? Take advantage of second opinions -THEY saved my life, actually. [Besides they're cheap compared to other options] And, never give up!
YOU KNOW that red alert! Bells are going off in your head and body... you've just got to learn to speak better 'doctor diagnostic speak' to get the point across. Read posts of prior folks experiences and see where you can pick up 'tips' and go from there.
I wish I could give you the 'wisest' way to talk to docs? But I gotta tell you, that if you get your doc on his/her 'bad day'? You'll know, and it mite be best to wait till the next time if it's like 3-4 months... if longer? BLURT out ONE or TWO key concerns and try to get those addressed by the neuro or other doc. Often? I feel like each visit is a 'roll of the dice' for both of us! Wish it were different? BUT key is to get DIAGNOSED and ASAP then..? Treated!!!
Good luck and all my hopes for you - :hug::hug::hug:'s - j

Dahlek

Thankyou so much. Your words and advice mean the world to me.
Its very hard to talk to doctors and get them to see. But I am lucky that my gp is so nice she runs whatever test I ask her. She knows my struggle. But the specialist give me the run around!
I always go alone. No one thee to speak on my behalf or fight for me cause that makes a big defference and my personality hides in the crowd so If I feel overwhelmed by the enormity of the doctor I get quiet:-(

But I need to learn how to talk and what to say to get proper answers.
I feel like there are so many clues un my case and my instinct tells me something is being missed right under the nose but I can't get them to investigate and look outside the box and see the whole picture.

Was your cancer Paraneoplatic?

Again Thankyou. You gave me some power to get up and fight for my self
Tulips

Paraneoplastic...because...
 

Key tests weren't done at key times. No matter..ergo no proof, and quite possibly no proof even IF at a key time! Cancers 'hatch' and then incubate for 5-10 years before they can be 'found'. In my case? I was very, very lucky in that a 'lump' was found by the docs...honestly, that lump I never felt from initial diagnosis to surgery! My neuropathy was so bad, I simply could not "feel it"...EVER.
And that was with a fairly complete family history about cancers in my family from both sides [but alas, not of this kind].... Docs ignored that from the 'get go'? UNTIL I got the cancer diagnosis. Then? Too late. And that's often the outcome.
I suggest that you get one of the better neurologists or rheumatologists do that blood work? Some of my work ups were sent to Athena, and others to Mayo..[with that? Be alert to insurance mess ups...once you get an insurance rejection? Call your main insurance customer service and ask for a 'special case' manager.... as what you and they are going to have to deal with is well? Complicated. Let the insurance company work it out. Save your blood pressure issues for other things.
In the meantime? GET DIAGNOSED! READ the Stickies and LEARN about diagnostics and Don't GIVE UP!
Trickier still? Tho, is once you've done your own dectective work? You still have to do a 'sell job' to get the DOCS do their Dect. work! Don't go in and TELL THEM WHAT TO DO! Sell them about it? Learn the lingo, and the KEY symptoms that are YOUR best leads to a diagnosis...let THEM run and think it's THEIR IDEA. Hey, honey gets more flies than vinegar?
In the meantime? :hug:'s again! - j