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TOPIC: Introduce Yourself

Introduce Yourself 1 year 11 months ago #3846

  • GJan
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Hi Paul. My CD was diagnosed about 10 years ago but it started a few years before that. I, like you, have a head tremor, which I was told by the diagnosing Consultant is a Dystonic tremor, and it has become hard to bear, to say the least! The Botox injections seem to make the tremor worse. I've considered giving up the injections but instead have had the dosage reduced which hasn't helped at all! I've had a chat with a Neurosurgen about DBS, which was a bit disappointing. The possible disadvantages seemed to outweigh the chance of any advantages.
Sorry to hear you're having a tough time, Paul. I hope things get easier for you. Best wishes.
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Introduce Yourself 1 year 11 months ago #3847

  • Steph2014
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Hi GJan, sorry to hear you are having such a hard time getting any help with your CD. I haven't posted on here for ages as I no longer have my condition, but I still get the emails, so I thought I'd offer something to try.

I used to have blepharospasm. I didn't have the eye closure as most people have but had muscle spasms around one eye and pulling a cheek upwards, this made me look like I was constantly frowning all the time and was incredibly tiring and embarrassing. Life was pretty miserable for about 14 months and I avoided all social contact and wore dark glasses. I tried lots of things but nothing worked. One evening I tried a milk thistle tincture under my tongue, the next morning, incredibly, I'd say 80% of my condition was improved. Didn't quite believe it but carried on and was almost back to normal. Months later, thanks to my sister, who was training to be a naturopath, I tried something called SF722 which is an anti-candida supplement, which seemed to help the final bit, so now I don't have any blepharospasm symptoms.

I know our conditions are different, but they are both movement disorders so it may be worth trying. Milk thistle is cheap enough to buy. The one I used was a tincture left over from a detox kit from the US but you can get the same thing here, then I continued with Thisilyn (milk thistle capsules) which you can get from Waitrose or H&B.

I've found milk thistle to be amazing. It helps detox the liver and can reverse mild liver damage. The liver detoxes our body of all the nasties that we eat, drink and breathe so it stands to reason, if the liver is too toxic to work properly, our body won't detox properly either. Also, candida is a nasty yeast that can get out of hand in the body when we eat too much sugar, as I do, and can cause all kinds of damage including affecting brain function, so decreasing the levels of this is a good thing.

I did post my experience ages ago but no-one seemed that interested, but I keep hearing about people's stories of suffering so I'm posting again in the hope that maybe it helps someone.

Good luck with whatever you try.
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The following user(s) said Thank You: flashkitten55

Introduce Yourself 1 year 11 months ago #3848

  • GJan
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Thanks, Steph. That sounds interesting and I'll certainly investigate it further. I'm glad it worked for you. Thanks again. Best wishes.
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Introduce Yourself 1 year 11 months ago #3849

  • Paul
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Hi all.
I've noticed with my cervical dystonia that I get cronic neck ache. The pain is most prevalent when moving my head to extreme positions eg far right, left, up, down.
The pain can be a sharp intense stabbing pain. The pain is at the top of my neck at the back sort of right at the top of my spine. Does anyone else get this?
Regards. Paul.
Last Edit: 1 year 11 months ago by Paul. Reason: Spelling
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Introduce Yourself 1 year 10 months ago #3865

  • Loulabelle
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Hi
I am new to the forum, not diagnosed but very confused, I have Primary Progressive MS
I have just posted a new topic explaining my concerns
I am in Dorset, anyone else??
thanks
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Introduce Yourself 1 year 10 months ago #3872

Hi Steph
I have a repetitive head nod that is really debilitating. I am going to try milk thistle & SF722. Thanks for the tip. I will keep you posted about the results......
Kat. (flashkitten55)
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