Yeah, in addition to the Chiari. i had originally tested with an ANA of 1:1280 which is the highest my lab could test so it could have been higher, who knows. Usually there's the automatic inclination to think lupus with high ANA titres. After 2 years of Plaquenil, i still test with a positive ANA of 1:320. i tested consistently positive with Antiphospholipid (too clotty), but always negative with anti DSDNA. The antiphos. runs in my family, but so does MS. i have at least 4 relatives on my father's side with MS, all women, and their daughters all have it as well. This was something that the Rheumatologist wanted to rule out years ago but put off doing the lumbar puncture for some reason and my Neuro symptoms either got ignored or *wrongly* attributed to the Chiari. In May of this year, i was beginning what i thought was a bad lupus flare, and my right arm went numb all the way up to the shoulder, and then toward the spine. i went to an Urgent Care appt and they ordered an MRI and referred me to follow up with Neurology. When they
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Hello there - I'm writing to welcome you to the multsclerosis community...I see that you were literally just diganosed. :( I'm so sorry. I know that this is probably a really tough time for you.
I just added you to the group. Please feel free to post an intro, ask a question, vent or anything else you'd like. I created this community to offer information, help and support for those diagnosed...and it has helped me so much. I hope it can do the same for you.
Thank you so much. i really have received so much support from people the past week and i do really appreciate it. i am one of those people who needs to have as much information and education (as well as resources) to wrap my brain around in order to cope, so i am sure the community will be a help. ive already read some posts that were at least very validating, and that's such an important thing. Thank you for your message, it was very appreciated. i will post soon with an intro to the group and hope that i will be able to contribute whatever i can. in the meantime, i am restless and awake in pain after my steroids... but today was my last infusion, thank goodness. im also mentally gearing myself up to start my Betaseron injections within the next 2 weeks. eep! Now i am off to take my Elavil and drift off to bladder-spasm-free sleep hopefully. ;) Thanks again, and i hope to talk with you again soon. [hugs]
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They thought I had that as well. In my case it was a complication of the chiari that was causing the MRI and LP to read that way.
I'm so sorry to hear that.
When they dxed you with lupus did you have an elevated ANA and anti DS DNA?
Do you still?
I know this all falls into the whole "What next" category, and I hope they at least have some decent meds and support for you.
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I just added you to the group. Please feel free to post an intro, ask a question, vent or anything else you'd like. I created this community to offer information, help and support for those diagnosed...and it has helped me so much. I hope it can do the same for you.
You can always message me if you want.
Take care,
Cheryl
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i really have received so much support from people the past week and i do really appreciate it. i am one of those people who needs to have as much information and education (as well as resources) to wrap my brain around in order to cope, so i am sure the community will be a help. ive already read some posts that were at least very validating, and that's such an important thing. Thank you for your message, it was very appreciated. i will post soon with an intro to the group and hope that i will be able to contribute whatever i can. in the meantime, i am restless and awake in pain after my steroids... but today was my last infusion, thank goodness. im also mentally gearing myself up to start my Betaseron injections within the next 2 weeks. eep!
Now i am off to take my Elavil and drift off to bladder-spasm-free sleep hopefully. ;)
Thanks again, and i hope to talk with you again soon.
[hugs]
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