Myotonia Congenita

Posted by kimcvi @kimcvi, Jul 20, 2020

Hello, does anyone here have MC and how to relive muscle pain

Interested in more discussions like this? Go to the Neuropathy group.

@jesfactsmon Hi Hank. Thanks for the recommendation. I did think of lowering my dose from 600mg daily. I can’t imagine 1200mg(yikes!) Since the product from Superior Labs worked, I wasn’t sure of other products. Superior Labs does not offer a smaller dose. I will look at the products you mentioned. After my email reply to Superior Labs, I got a response to eat food when taking the capsule. I just tried taking a 600mg capsule after eating food that stays in my stomach longer. It has been a half hour now. So far, so good. I may try the lower dose next if need be. Has Linda been able to find the right ALA for her?

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@avmcbellar

@rwinney, Rachel thanks for the information. Unfortunately, I am no longer on facebook to be aware of Protocal. I did hear from the manufacturer but I was disappointed with their advice to contact my physician. Seems like an easy way out. I plan to continue with trial and error until I find the right solution for myself. I want to avoid medications. I will follow up with Protocal, the supplement John recommended. How is your photophobia, decreased any after the opthalmology visit?

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Hi @avmcbellar, Although the Protocol group primarily uses Facebook for support and questions, they setup a website for ordering their new Protocol 525 product which reduces the total number of pills we had to take daily. The website still has links to order the original products from Amazon and they also have instructions for ramping up on R-ALA since it does cause issues for most people when they start the high doses. Here's the website – https://solutions2pnpd.com/ The instruction page is listed at the bottom and includes the original vs 525 product comparison as well as the instructions on how to ramp up on the R-ALA.

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@johnbishop Hi John, I was hoping to handle the common 600mg dose. Since I had gastro issues with the ALA I went online where I read a recommendation for people over 50 to start with a dose of 200mg-400mg daily. I guess some folks become old and can’t handle as much. I think it depends on health issues, lol, and not the age. Thank you for the info. Now I have a few options to look at to continue with the ALA. I will figure out what works best for me. By the way, I think I found my answer to weight loss since ALA helps convert glucose to energy. Thanks again. Let you know my progress.

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@avmcbellar

@rwinney, Rachel thanks for the information. Unfortunately, I am no longer on facebook to be aware of Protocal. I did hear from the manufacturer but I was disappointed with their advice to contact my physician. Seems like an easy way out. I plan to continue with trial and error until I find the right solution for myself. I want to avoid medications. I will follow up with Protocal, the supplement John recommended. How is your photophobia, decreased any after the opthalmology visit?

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No, not really. Photophobia ties into migraine for me also which has been triggering again recently.

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Rachel, did any recommendations your neuro ophthalmologist give you help? How about the tinted glasses?

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@avmcbellar

Rachel, did any recommendations your neuro ophthalmologist give you help? How about the tinted glasses?

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I'm not into the rose tinted glasses. I will keep doing what I'm doing with regards to switching between different shades of sunglasses accordingly and adjusting my screen brightness, blinds, TV, visor etc, etc… I am using the different steroid drop but not really noticing any change. Thanks for asking.

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I am sorry to hear you didn’t get any relief. Does your neurologist think any surgery might help? Well, if my daily routine was good enough for me to be comfortable then I wouldn’t want to take anymore health risks.

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@avmcbellar

I am sorry to hear you didn’t get any relief. Does your neurologist think any surgery might help? Well, if my daily routine was good enough for me to be comfortable then I wouldn’t want to take anymore health risks.

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No evidence that surgery can help. I've had enough surgeries on my eyes therefore it would be my very last resort. Cornea transplants most likely will need to be in my future again also.

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@rwinney

No evidence that surgery can help. I've had enough surgeries on my eyes therefore it would be my very last resort. Cornea transplants most likely will need to be in my future again also.

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Really? Ugh! 😒

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@rwinney

No evidence that surgery can help. I've had enough surgeries on my eyes therefore it would be my very last resort. Cornea transplants most likely will need to be in my future again also.

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Well, you tried with getting another opinion and now you know with more certainty. Just keep looking for new and improved developments. You never know with breakthroughs. You have had good luck with the cornea transplants lasting longer. Maybe advancements have been made with the transplants since you had the surgery.

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