Hang in there and GET that danged diagnosis!

December 2, 2010 at 6:45 pm

Every month counts… especially in terms of treatment, and recovery! It took me 14 months and it wasn’t a minute too soon! For several years things were in total abayence, meaning things didn’t get worse, and..at times even better!
Note also that set-backs are the norm, and be prepared for that.
As for Nerve testing? I showed only slight diminishing of functions at first. It took a good 6-9 months of partial immobility and inactivity, plus increased nerve pain progression. It’s well documented that many CIDP cases do not show total disability to the degree of GBS folks.
Read this web site about nerve and muscular diagnostics…it’s VAST. It also will let YOU know that your doc can’t know about ALL of this?
urlhttp://neuromuscular.wustl.edu/alfindex.htmurl and this portion in particular: urlhttp://neuromuscular.wustl.edu/antibody/pnimdem.htmlurl
Do NOT LET THIS SCARE YOU! Use it’s info as your tool to zero in as to what you have! Read up about the testing and know what you are in for…it’s a long road? But much shorter if you go thru ‘the mill’ and get diagnosed and treated! At least? Find out and keep track of the tests that are done – get copies!!! They can tell you more than you mite want to know? Or not much -either way you know where you stand or wobble in some quarters.
Whatever you do? Keep your descriptions as concise and as consistent as possible! IF you have new ‘developments’? You can use your past consistent descriptions to augment or amplify and new ‘developments’!
AS FOR ‘ANXIETY’? DUH!???? Who wouldn’t be anxious with this stuff! If they’re NOT anxious? I’d really worry.
Keep faith, keep at IT and Bless you for your efforts!!! It’s not easy I know, but it’s worth it in the end. HUGS!!!!!!!!