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Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS). |
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01-01-2014, 09:22 PM | #1 | ||
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i've had dystonia and fibro for about 2.5 yrs. it's taken control of my life and it's affecting my family as well since i'm always mad and irritated. meds dont' work. my neurologist is out of answers since the Botox is not responding. i don't know what to do. my depression is getting worse and i find myself wishing i don't wake up to avoid going through my painful days. i know my stress from everything i'm going through doesn't help due to the pain. I don't know what to do anymore. is anyone out there going through the same thing?
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03-15-2014, 04:45 AM | #2 | ||
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Since most medications do not do as advertised for me, I am limited to what will work and have had to find alternate ways. I use accupressure to relieve symptoms. And I use a form of massage called Myotherapy - check it out and see if it might help. I was absolutely near death at one point because of pain and depression and could not convince doctors that what they were doing did not work. If medicine for me is not aspirin based it does not touch the pain. The myotherapy stopped the carpal tunnel symptons, thyroid symptoms and when the spinal arthritis acts up, it helps that as well. I am a many years dancer with the associated problems as well, but depend wholly on holistic ideas and massage. Even if it does not "fix" you, it certain would be a help. Try it. |
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11-06-2014, 01:37 PM | #3 | |||
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11-10-2014, 11:35 PM | #4 | ||
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11-12-2014, 07:12 PM | #5 | ||
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yea i feel you, i got dx with DRD and my careers in the arts are completely shot, cant play my instrument, dance career is over, i can barely get the primal survival skills down living solo just to survive. yeah it sucks. i got dx about 4 weeks ago and am on 25/100 sinement 3/day + the other 6 drugs.
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01-19-2015, 12:00 AM | #6 | ||
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You are going through what so many of us do. We all start out being treated with botox but if you get high doses, eventually antibodies are likely to develop. For some people it just doesn't seem to work at all. I had selective peripheral denervation ten years ago and my result was very good. My head was turned far to the right and slightly upward. However, I must tell you very honestly that this surgery will result in a drastic change to your physiology which creates a new set of problems you will need to adapt to. First of all, it is a major surgery requiring 8-9 hours in the operating room and a long, difficult recovery. There will be permanent numbness across the entire back of the head and a feeling a tightness. If you can adapt to and live with these issues then at least your head will be much straighter and you will be able to FUNCTION much more like you once did. It is a trade off. I don't think DBS (deep brain stimulation) is going to give as good of results, and I myself would not opt to have an electrode implanted in my brain. If the dystonia you have is below the moderate level, I would stick with pharmaceutical means like Klonopin to help abate it somewhat. If however, it is moderate to severe, surgery is an option that can really help, but tough to go through, recover from, and live with the consequences of it. You can also try finding another neurologist to see if he or she is more successful at treating you with other forms of botox you may have not received. If you want to discuss it further please contact me. Only too glad to help.
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01-19-2015, 07:37 PM | #7 | |||
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Legendary
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Hello Amster,
Welcome to the NeuroTalk Support Groups! |
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"Thanks for this!" says: | Kitt (01-20-2015) |
01-20-2015, 10:17 AM | #8 | ||
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Welcome Amster.
__________________
Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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01-23-2015, 10:12 PM | #9 | ||
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I have had Fibromyalgia for about 4 years now and was diagnosed 2 days ago with Chorea. So far I have not been told much about this and how long it can affect me. I am 44 years old and never displayed more than a twich or shrug of my shoulders in the last 4-6 months. in within days it has gotten so much worse. Has anyone experinced this?
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01-07-2016, 03:14 PM | #10 | ||
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