Hi all,
I saw my Neurologist yesterday and as far as my worsening dystonic and hand tremors go he feels it could very well be due to my Epilim (seizure med which I have been using for neuro pain). It's not easy to get Neurontin here without jumping through a lot of hoops and rigmarole but he has started me on a low dose and we intend to go upwards to 1200mg if I can take it and during that time wean me off the Epilim. I have to see him in 6-8 weeks to see how I am tolerating it.
He isnt sure if Epilim is contributing to the worsening dystonia (esp in my neck) or if it's the disease doing that. If it doesnt improve we will indeed be doing botox injections as we have talked about so many times before but he wants to see what we are left with once the med problems are sorted.
Ironic that I should see him yesterday. This always happens to me that I see one specialist when I should be seeing the other because something else crops up. My parotid gland was swollen and painful yesterday, I thought the pain may have been from the jaw/ear/nerve pain I've been having off and on but when DD saw me she said it was swollen
and yes it was!! She wanted me to take a photo of it but I will just tell the Immuno when I see him in 8 weeks. It seems to have gone down a bit today and I chewed my way through lots of sugarless gum yesterday hoping that might help :hehe:
What I want to know is why is it that I am fairly stable Lupus wise and then the stupid Sjogrens decides to up the anti on me :hissy:
I hope you are all doing as well as you can be :hugbetter:
love
Lily
I saw my Neurologist yesterday and as far as my worsening dystonic and hand tremors go he feels it could very well be due to my Epilim (seizure med which I have been using for neuro pain). It's not easy to get Neurontin here without jumping through a lot of hoops and rigmarole but he has started me on a low dose and we intend to go upwards to 1200mg if I can take it and during that time wean me off the Epilim. I have to see him in 6-8 weeks to see how I am tolerating it.
He isnt sure if Epilim is contributing to the worsening dystonia (esp in my neck) or if it's the disease doing that. If it doesnt improve we will indeed be doing botox injections as we have talked about so many times before but he wants to see what we are left with once the med problems are sorted.
Ironic that I should see him yesterday. This always happens to me that I see one specialist when I should be seeing the other because something else crops up. My parotid gland was swollen and painful yesterday, I thought the pain may have been from the jaw/ear/nerve pain I've been having off and on but when DD saw me she said it was swollen
What I want to know is why is it that I am fairly stable Lupus wise and then the stupid Sjogrens decides to up the anti on me :hissy:
I hope you are all doing as well as you can be :hugbetter:
love
Lily