View Full Version : Missing you all!!!!!

02-24-2010, 11:43 AM
HELLO my LUPIE FRIENDS!!!!! Not on for long but wanted to update you on my health. I havent gotten my biopsy yet of my lymph nodes because Carl was in the hospital the day i was supposed to go in. He was having soem heart issues and they kept him in a couple of days to monitor him. Hes doing better now, he has more to be done Tuesday. So, i go to get my biopsy on Thursday,then i get my colonoscopy either Friday or early the following week. I had tests done 2 days ago by my neurologist and my Lupus and Sjogrens has caused nerve damage in both my arms and legs. The dr said i have to keep ANY PRESSURE OFF of them no matter what or the nerve will end up dying off all together. That would mean my hands and feet will be bent up and back FOREVER and its not irreversable. UGH! Now THAT would be BAD huh! I have to wear special "nerve protectors" (especially at night) on my elbows. He said this type of nerve damage i have ONLY is found in people with Sjogrens, Lupus and/or Rheumatoid arthritis. He told me he would be more than HAPPY to send ANY drs of mine (past and/or present) these results to throw it in their face that i HAVE been SICK for these past 4 years! LOL I said HELL YEAH! LOL:wacko:

02-24-2010, 12:59 PM
Please DO take your doctor up on that offer to send information to your previous doctors. Don't forget to add your opinions about them to his letters! They need to be made aware of your negligent practice and how detrimental their failure could have been to your health!

I am so sorry to hear that you have nerve damage, but I truly hope that you can avoid any further damage!
I am so proud of you for staying strong and positive. I truly admire that about you. You know that we are all here for you and that we are rooting for you!

Peace and Blessings

02-24-2010, 01:00 PM
Good for you, Jeanette,
Keep hanging in there and demand to get the right care.
Did you have neuropathy (numbness) in your legs and toes from that nerve damage? I have that, but my doc insisted that I get an MRI of my back, blaming the neuropathy on degenerative disc problems. I've kept asking if it came from the Sjogren's (I've been researching), but the rheumy dismisses it.
Now you've really got me wondering....

02-24-2010, 02:12 PM
AWWWW~such SWEET WORDS Susie! AND, HECK YEAH im sending these results to ALL the drs who have come and gone! WOO HOO to THAT! IN THERE FACES is what Carl and I say! The neuro looked me right in the eye and said "this problem IS NOT in your head and YOU CANT make it happen YOurself Jeannette,this is the ILLNESSES and EVERY DR in your life NEEDS to KNOW THAT". I almost started to cry! Those words meant SO MUCH!

Hi Marla! THANK YOU! Yup, im DEMANDING the RIGHT CARE THESE DAYS! No more Mrs. Nice Girl! LOL Hey, my dr tested my nerves from my lower back as well because i have a broken L5 and NO DISC inbetween, so he wanted to make sure noo nerves are getting damaged from the grinding bone on bone and the slipping around going on down there. Guess what, they are working GREAT he said, my numbers for that are in a GREAT range , he showed me the #s on the screen during the test.He said my back has NOTHING to do with the nerve damage i have, those nerves are just fine he said, NO DAMAGE AT ALL! I told him that the drs that have blown me off for yrs kept saying that my back issues were why i am experiencing numbness in my arms,legs fingers and feet! He said,HECK NO there not! This nerve damage is very specific and only Sjogrens,Lupus and/or RA can cause this type of nerve damage I HAVE! SO PLEASE PLEASE PLEASE get to another dr or demand this one to do the test! My neuro said im not far away form the nerves dying off altogether! He was so HAPPY we found the damage when we did! If he hadnt of come and checked me out while i was in the hospital (he was the neuro on call that weekend!) he wouldnt be in my life right now. He couldnt believe no other drs EVER even mentioned doing this test! I have even been to 2 neuros before him! UGH! Please let me know how it goes. DONT WAIT ANY LONGER, it could mean the loss of use in your hands and feet. GOOD LUCK!