Hi my name is Donna
Posted: Thu Aug 11, 2011 1:02 am
I was dx'd with SLE 10 years ago and I never quite believed it something told me it wasnt right but since I had a borderline ANA and met so much of the criteria I felt that I was just in denial. I lived in Reno and after having my hand slammed in a door by wind within a week I felt like my entire body was on fire. I could not stand without help, It took 6 months for a dx to come in. I then moved to Gainesville Florida where there is a lupus clinic this specialist that I saw told me I did NOT have Lupus and had something else I would need to start over. I went to another Rhuemy and was told that I DID have lupus.
After awhile I felt that I needed to go home to my family for the support they could lend me in all of this. Right away my new doctor in Washington state thought I could possibly have either CNS (associated with my lupus) or MS so I was sent for the first time to a Neurologist and sent for my first MRI it showed a few small plaques and I passed the Neuro test so I was told to wait and see. I waited to long and 4 years later I am now facing a probable dx of MS. I forget everything and gibberish comes out of my mouth my vitamin D levels are 14 and oen level is 4 they put me on 50000 iu of D and im scheduled for a nerve conduction test, MRI, Cat scan and Full spinal MRI a three hour test done in one day schecduled for August 20. My doctor stated that my labs point to MS so we will just have to wait until the MRI and Cat scan comes out but as im sure most of you know I already know what im facing and im scared I have had very very very few good days in the past 10 years I have lost a large part of my vision which does come and go but the pain rarely does, my heart is always pounding but there appears to be nothing wrong I choke on my own spit and have this weird feeling sometimes in the area under my breasts almost like a tightening, there is complete numbness in my right leg and strange tinglings that dont feel like my feet falling asleep but sort of does its hard to describe. I have severe back pain and a burning feeling betweeen my shoulder blades. My arms twitch my legs twitch and my left arm is so weak I cant use it to open a window anymore. Last month I hit my limit with my doctor and fired him and got a new doctor after I got out of bed and collapsed I swear to all that I did not feel my legs and felt no pain to be honest I felt paralyzed for one minute my doctor did not appear to take me seriously but my new doctor is rushing to get to the answers behind all of this and appears to be taking me seriously I am scared, confused not sure what to think and how to proceed during this time. How do I go on and how can I possibly put my family thru more when already they are so sick of me being sick. thank you for reading this it feels good to get it off my chest.
After awhile I felt that I needed to go home to my family for the support they could lend me in all of this. Right away my new doctor in Washington state thought I could possibly have either CNS (associated with my lupus) or MS so I was sent for the first time to a Neurologist and sent for my first MRI it showed a few small plaques and I passed the Neuro test so I was told to wait and see. I waited to long and 4 years later I am now facing a probable dx of MS. I forget everything and gibberish comes out of my mouth my vitamin D levels are 14 and oen level is 4 they put me on 50000 iu of D and im scheduled for a nerve conduction test, MRI, Cat scan and Full spinal MRI a three hour test done in one day schecduled for August 20. My doctor stated that my labs point to MS so we will just have to wait until the MRI and Cat scan comes out but as im sure most of you know I already know what im facing and im scared I have had very very very few good days in the past 10 years I have lost a large part of my vision which does come and go but the pain rarely does, my heart is always pounding but there appears to be nothing wrong I choke on my own spit and have this weird feeling sometimes in the area under my breasts almost like a tightening, there is complete numbness in my right leg and strange tinglings that dont feel like my feet falling asleep but sort of does its hard to describe. I have severe back pain and a burning feeling betweeen my shoulder blades. My arms twitch my legs twitch and my left arm is so weak I cant use it to open a window anymore. Last month I hit my limit with my doctor and fired him and got a new doctor after I got out of bed and collapsed I swear to all that I did not feel my legs and felt no pain to be honest I felt paralyzed for one minute my doctor did not appear to take me seriously but my new doctor is rushing to get to the answers behind all of this and appears to be taking me seriously I am scared, confused not sure what to think and how to proceed during this time. How do I go on and how can I possibly put my family thru more when already they are so sick of me being sick. thank you for reading this it feels good to get it off my chest.