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Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS). |
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05-13-2013, 06:18 PM | #1 | ||
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Hi,
I have been suffering from Spinal Myoclonus for 15 years or so now, I have self diagnosed as the Neurologist I saw years ago and the MRI Spinal and brain scan showed nothing, they just wanted to put me on horrid drugs used for epilepsy. My jerks were severe and when I very occasionally get them now, if laying on my back my back will arch up violently and knees come up toward my stomach, I used to get 60 of these in very quick succession, to alleviate it I would stand on our stone floor in the bathroom and put my spine against the coldest wall, it was almost like unearthing! About 7 years ago I decided to cut out everything in my diet and gradually re-introduce, and found i cannot tolerate ANYTHING with an E NUMBER or ANY preservatives at all... No cut bread, no supermarket cakes, no pizza (unless I make the dough myself and definitely no alcohol (makes it much worse). I followed this and found months, years of RELIEF, certainly not 60 jerks a night every night as it used to be. However, I have tonsillitis at the mo and have been prescribed Clarithromycin (these drugs are yellow coloured, apparently the drugs company feel that they need to be yellow for some reason) I suffered last night (due to the colouring) and know that I will suffer until the course is finished. I beg all of you fellow sufferers to look at what you eat, I had a terrible time with a Cadburys Creme Egg due to the colouring, takeaways, burgers (shock horror if you eat the buns from the golden arches). PS: I did also have a bad horse riding accident and a neck accident years ago, whether this was the primary cause or not or often wondered if it was the epidural I had during childbirth. |
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10-21-2013, 02:24 PM | #2 | ||
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Quote:
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04-29-2014, 04:46 AM | #3 | ||
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My niece has Myocolnus in her right leg/hip. She suffers with about 10 episodes a day and most days falls over when it relaxes. We are looking into a course of Botox injections into the muscle which may help. It is very challenging as she was 14 when she started with this and will be 19 in November. She has missed pretty much all her college years and we are desperately trying to find help for her. Has any one mentioned these injections to you? Thanks Clare x |
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02-21-2015, 07:37 PM | #4 | ||
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john |
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02-21-2015, 07:41 PM | #5 | ||
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Legendary
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Hi John,
I just wanted to let you know (in case you didn't already) that Topsie posted way back in 2008/2009. |
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02-22-2015, 07:50 PM | #6 | ||
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"Thanks for this!" says: | Lara (02-23-2015) |
12-01-2015, 06:12 AM | #7 | ||
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Hi,
I hope you all find this post to be extremely helpful. I've had palatial myoclonus since age 31. Diagoned in 2004, first told I had epilepsy as was given Depekote. Didn't work. Many smart doctors gave me meds, had never seen throat spasms in someone so young. Many MRIs, no lesions. Bottom line: Palatal Myoclonus is a descriptive condition. Clozepam helps. But fades over time. You need to see a chiropractor to do low back and neck adjustments. I used to take 4 mgs of Klonipin per day. Now, 11 years later, I take 4 per week. I do yoga. I stretch. I get bi-weekly adjustments because the nerves are firing because of stress and pressure on joints. You have to do the work. Stretch, have a professional move bones. It works. It's not perfect, but I almost couldn't survive until I got targeted Chiro treatment. Yoga is also amazing. Get your body right, it takes time, but pays off. So Chiro, yoga, back alignment, and some Klonipin help a ton. My neck is firing off now, my low back hurts, so I will do yoga again tomorrow , then an adjaument. Taking just drugs is not the answer. If you need more guidance, let me know. I've been at my worst, 8 years in, now at my best 11 years in. At 41, best shape of life, still tough at times, but I can get through it. You can too. Let's go! |
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