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ricketyrose
09-11-2009, 10:14 PM
I am a 34 year old las vegas resident but I am originally form San jose
all right here it goes. 7 years ago I had a horrible pain all over my body that felt like I had frost bite and was defrosting. one day later I was fully paralyzed with GBS. I recovered with plasma pherisis treatment in two weeks

one year later I had the same neuropathy symptoms only less intense and a horrible pain in the back of my neck and head that even dilaudid coulnt touch it went away in one week.

another year later I had the same deep aches in my legs (less intense) the next day I could barely walk. I had to crawl up the stairs on my hands and knees. this went on relapsing and remitting for about six months and then it morphed. the neuropathy subsided and it turned into monthly bouts of musculoskelatal pain. during this time I had a lession at C-5 and c-6 so they thought it was MS but after many repetative test it was not. I thought it was CIDP the chronic version of GBS but they disagreed. they did all of the blood tests twice and all normal.

the neuropathy went away for 5 years but dring that time I have suffered from unexplained fevers that came with that same deep ache in my wrists, my hands, knees and toes and the skin over it hurt to touch as soon I would go to sleep I would wake up fine. also the musculo skelatal pain was like a toxic, poisoned feeling if I dont get ontop of it with pain meds it will run away and spead through my body and cause a migrain. all this subsided during a healthy uneventful pregnancy and then came back about 6 months after the birth of my daughter (three years ago).

I have since had monthly bouts of musculoskelatal pain that sometimes sometimes does not coincide with my period. 8 bouts of possitional vertigo and 6 lumbar strains

last may the neuropthy came back this time it stayed at a slow and steady pattern. after a clear brain MRI I finally found a doctor to look at CIDP and gave me an emg which showed demylination. then he did blood tests and this time a slightly possitive ANA. so thus derailing any diagnosis with CIDP.

My questions are; is it possible to have lupus with a negative ANA?

If demylination occurs with lupus in peripheral neuropthy how can one tell the difference between someone with lupus mediated neuropathy and someone with both lupus and CIDP? wouldnt they both cause the onion bulbing after regenerating.

IS there such thing as a GBS onset or acute neuropathic onset for lupus?

mountaindreamer
09-12-2009, 08:25 AM
hi ricketyrose,

welcome to our group....you have been through so much medical misery in the past 7 years, and you have become a mother....you have been really busy.

it appears to be a common event for delivering babies to make lupus take action. There have been several new younger members to talk about lupus attacks following child birth. I had trouble as a young mother, but not very severe. Three years ago, my 31 year-old daughter was diagnosed with breast cancer, and i entered into the fight of my life....trying to save my child's life. After we got through this battle with Galiath (sp), my lupus attacked with a vengence and has not let up....

i can't answer all of your questions, (i am not familiar with CIDP), so i will learn with you when our more medically informed members respond with answers.

again, welcome, i look forward to learning with you.