Re: LORI and JOANN - Dystonia

[Guest guest]

Barbara,

Thank you, I know they had all different kinds which I Don't have, thankfully. But the treatment options...I believe...are the same no matter what type you have, even if what you have is secondary to another disease. The first option, the oral meds, are what my doctor has started me on. I want to ask him about the Botox but I think that is more for the other type of Dystonia. The third option they mention surgery, but I read some of it and they mean like to put in a pain pump with Baclofen and some other meds...this is what my doctor is going to do if the oral medication does not work. So I think the outcome is the same, even if it is secondary dystonia. I hope I'm wrong and I'm trying to keep my hope up some, but I can't even touch my foot anymore and I don't know how it is going to get better...not anytime soon anyway. I hope this makes sense...this is why I'm freaked out, not that I have it in my vocal chords or eyes or anything, but thanks for the pep talk!

<hugs> Lori

[Guest guest]

One of the oral meds that I'm on seems to help with it. I don't think they go the more heavy duty routes unless it's really needed. I know all of this tends to get pretty overwhelming...I'm sure your doc will steer you right and hlep you get as comfortable as possiblte. BarbaraAlwayzLoRi@... wrote:

Barbara,

Thank you, I know they had all different kinds which I Don't have, thankfully. But the treatment options...I believe...are the same no matter what type you have, even if what you have is secondary to another disease. The first option, the oral meds, are what my doctor has started me on. I want to ask him about the Botox but I think that is more for the other type of Dystonia. The third option they mention surgery, but I read some of it and they mean like to put in a pain pump with Baclofen and some other meds...this is what my doctor is going to do if the oral medication does not work. So I think the outcome is the same, even if it is secondary dystonia. I hope I'm wrong and I'm trying to keep my hope up some, but I can't even touch my foot anymore and I don't know how it is going to get better...not anytime soon anyway. I hope this makes sense...this is why I'm freaked out, not that I have it in my vocal chords or eyes or anything, but thanks for the pep

talk!

<hugs> Lori

[Guest guest]

One of the oral meds that I'm on seems to help with it. I don't think they go the more heavy duty routes unless it's really needed. I know all of this tends to get pretty overwhelming...I'm sure your doc will steer you right and hlep you get as comfortable as possiblte. BarbaraAlwayzLoRi@... wrote:

Barbara,

Thank you, I know they had all different kinds which I Don't have, thankfully. But the treatment options...I believe...are the same no matter what type you have, even if what you have is secondary to another disease. The first option, the oral meds, are what my doctor has started me on. I want to ask him about the Botox but I think that is more for the other type of Dystonia. The third option they mention surgery, but I read some of it and they mean like to put in a pain pump with Baclofen and some other meds...this is what my doctor is going to do if the oral medication does not work. So I think the outcome is the same, even if it is secondary dystonia. I hope I'm wrong and I'm trying to keep my hope up some, but I can't even touch my foot anymore and I don't know how it is going to get better...not anytime soon anyway. I hope this makes sense...this is why I'm freaked out, not that I have it in my vocal chords or eyes or anything, but thanks for the pep

talk!

<hugs> Lori