Hi Jo
Yes - this is just to say 'me too'.
I had similar tests in similar order to you and was very alarmed to be tested for MS. I knew nothing about SLE until I came on the site.
I have since been diagnosed with SLE, Hughes Syndrome / Antiphospholipid Syndrome, and Sjogrens Syndrome.
It is interesting that my symptoms are similar re. headaches, pins and needles - mainly in hands, headaches, visual disturbances. Before treatment I was very weary and slept a lot too. I mainly struggle with achy muscles and joints now, but it seems to come and go with no rhym or reason. Some skin problems in summer, but only a faint rosy, slightly lumpy rash across cheeks when i am at my worst. Lovely livedo reticularis around knees and loer thighs all the time.
It is interesting that Lazylegs mentioned MRI of thoracic spine as I have some problems there that amount to arthritic changes and a spot of scoliosis. I sometimes wonder if that causes the pins and needles and uncomfortable neck. It sure hurts my back when it is troubling me. It might be worth checking out?
Since treatment I have improved considerably, even though I do have bouts where i cannnot really get the aches and pains properly under control.
My visual disturbances were actually linked to migraine and this has been 'cured' with a small dose of a betablocker. I once 'lost' the left side of everything that should have been in my visual field. I have also experienced shimmering vision, and sometimes things would appear to be moving when they were not. I once spent a good 10 minutes trying to concentrate enough to make the towel holder in my bedroom stop moving downwards and to the right. Now all I get is a bit of blurring from strings of mucus moving acorss my eyes from time to time - far better!
Getting diagnosed and treated has really improved my quality of life.
You made me smile as i too get a tick in my left eye - always have done - especially when tired, but i thank heavens it is not noticable to others. Except children - they spot everything. I always seem to have hot palms and soles - is this linked to the condition, or just one of those things, do you know?
Anyway - a big welcome to the site. It might not be helpful, but it is a big 'me too'.
Take care.
Yes - this is just to say 'me too'.
I had similar tests in similar order to you and was very alarmed to be tested for MS. I knew nothing about SLE until I came on the site.
I have since been diagnosed with SLE, Hughes Syndrome / Antiphospholipid Syndrome, and Sjogrens Syndrome.
It is interesting that my symptoms are similar re. headaches, pins and needles - mainly in hands, headaches, visual disturbances. Before treatment I was very weary and slept a lot too. I mainly struggle with achy muscles and joints now, but it seems to come and go with no rhym or reason. Some skin problems in summer, but only a faint rosy, slightly lumpy rash across cheeks when i am at my worst. Lovely livedo reticularis around knees and loer thighs all the time.
It is interesting that Lazylegs mentioned MRI of thoracic spine as I have some problems there that amount to arthritic changes and a spot of scoliosis. I sometimes wonder if that causes the pins and needles and uncomfortable neck. It sure hurts my back when it is troubling me. It might be worth checking out?
Since treatment I have improved considerably, even though I do have bouts where i cannnot really get the aches and pains properly under control.
My visual disturbances were actually linked to migraine and this has been 'cured' with a small dose of a betablocker. I once 'lost' the left side of everything that should have been in my visual field. I have also experienced shimmering vision, and sometimes things would appear to be moving when they were not. I once spent a good 10 minutes trying to concentrate enough to make the towel holder in my bedroom stop moving downwards and to the right. Now all I get is a bit of blurring from strings of mucus moving acorss my eyes from time to time - far better!
Getting diagnosed and treated has really improved my quality of life.
You made me smile as i too get a tick in my left eye - always have done - especially when tired, but i thank heavens it is not noticable to others. Except children - they spot everything. I always seem to have hot palms and soles - is this linked to the condition, or just one of those things, do you know?
Anyway - a big welcome to the site. It might not be helpful, but it is a big 'me too'.
Take care.
