[kickersmom]

Happy to have found this forum.... with my recent diagnosis of dystonia...question for others who have been diagnosed/treated for the same... it's been a week since my first botox injections and am still suffering.... if this treatment has not worked at this point, will it ever? after a year and a half of suffering neck pain, inability to rotate my head to the right, etc... I believe an accurate diagnosis has finally been made... but I am more than ready to have some relief! thanks for any input....

[Kitt]

Welcome kickersmom.

[Lara]

Hello kickersmom,
Welcome to the NeuroTalk Support Groups.

You could post over on the
Movement Disorders Forum

You could also try a forum search for dystonia and botox.
http://neurotalk.psychcentral.com/search.php
That feature enables a member to find posts or threads forum wide or in one forum specifically.

I hope you find some relief with the botox.
take care.

[Darlene]

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[damon4309]

Originally Posted by kickersmom

Happy to have found this forum.... with my recent diagnosis of dystonia...question for others who have been diagnosed/treated for the same... it's been a week since my first botox injections and am still suffering.... if this treatment has not worked at this point, will it ever? after a year and a half of suffering neck pain, inability to rotate my head to the right, etc... I believe an accurate diagnosis has finally been made... but I am more than ready to have some relief! thanks for any input....

Hi
I started to have leg and foot cramping about 4-5 months ago and my MDS DX Dystonia. I had DBS 1 year ago In May My MDS injected about 10 shots of botox ito my calves and feet. I felt no improvement. The next round is set for August 10. Hopefully this will help. I am told it can take several tries before they get it right. Having a lot of cramping pain (uncomfortable but tolerable)
I was prescribed Zanaflex. This has helped somewhat and I am still experimenting with the best times to take it 2mg 3x per day. It makes one drousy.
Question...Dystonia due to Parkinsons and levodopa responsive is this progressive? What I mean is will my head and hand twist and curl or is it unlikely? I was told that this type of dystonia is unlikely to progress. Can
anyone share their experiences.
Thank you all and have a happy 4th.
Damon

[damon4309]

Originally Posted by damon4309

Hi
I started to have leg and foot cramping about 4-5 months ago and my MDS DX Dystonia. I had DBS 1 year ago In May My MDS injected about 10 shots of botox ito my calves and feet. I felt no improvement. The next round is set for August 10. Hopefully this will help. I am told it can take several tries before they get it right. Having a lot of cramping pain (uncomfortable but tolerable)
I was prescribed Zanaflex. This has helped somewhat and I am still experimenting with the best times to take it 2mg 3x per day. It makes one drousy.
Question...Dystonia due to Parkinsons and levodopa responsive is this progressive? What I mean is will my head and hand twist and curl or is it unlikely? I was told that this type of dystonia is unlikely to progress. Can
anyone share their experiences.
Thank you all and have a happy 4th.
Damon

Sometimes this board frustrates me. Why was this not moved the top?

[bluesfan]

Originally Posted by damon4309

Sometimes this board frustrates me. Why was this not moved the top?

Hi Damon4309
Not quite sure if this is right but I think when you make a post - as the originator of the post it doesn't appear on your own 'New Posts' list but does appear for everyone else. I vaguely remember reading about this a while ago so will try and search back for a more accurate explanation -or maybe someone else can fill us in.

Editing this to add additional info: This was originally posted by MrsD. (MrsD - hope you don't mind my re-using it)

"If you have viewed your posts in subscribed first, they will drop off the "new posts" list.

Once you view a post it drops off. If you however go back, using the back arrow to "new posts" you may see the post you just viewed and unbolded.

In new posts, there will be the newest, then a separation, showing all the posts you have not viewed yet, below them since your last log out.

I have found that you cannot see your last posts made, in new posts. The exception to that is if you replied to a post, but there was someone before you that you did not view yet, your post with your name may appear in new posts. But that doesn't happen too often.

If your cache is too full, the logging of new posts may not be accurate. So you should clear your cache fairly often for accuracy there. Sometimes people see old cached pages instead of new ones."