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.

@rwinney

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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@rwinney Do you have a Dale McIntosh center there where you live? We have one here that helps with vision low vision I just got new darker sunglasses from them A lot better it's blocks more of the sunlight

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@lioness

@rwinney Do you have a Dale McIntosh center there where you live? We have one here that helps with vision low vision I just got new darker sunglasses from them A lot better it's blocks more of the sunlight

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@lioness No ma'am I don't have one where I live. But, thank you. I'm doing alright for now

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@avmcbellar

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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@rwinney You have endured so much with your eyes, Rachel. I am so illiterate about eye problems that I have contributed nothing. However, I was by your side, hearing, and caring. I just do not have any knowledge when it comes to eyes. I guess that means that God has graced me with good eyes! I am so sorry for the problems you have endured with your eyes. I feel helpless as what to contribute. Totally don't know about the subject!!!! Love to you, Lori

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@lorirenee1

@rwinney You have endured so much with your eyes, Rachel. I am so illiterate about eye problems that I have contributed nothing. However, I was by your side, hearing, and caring. I just do not have any knowledge when it comes to eyes. I guess that means that God has graced me with good eyes! I am so sorry for the problems you have endured with your eyes. I feel helpless as what to contribute. Totally don't know about the subject!!!! Love to you, Lori

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@lorirenee1You, my friend, help in ways you dont even realize. No apologies please. How are you today?

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@lorirenee1

@rwinney You have endured so much with your eyes, Rachel. I am so illiterate about eye problems that I have contributed nothing. However, I was by your side, hearing, and caring. I just do not have any knowledge when it comes to eyes. I guess that means that God has graced me with good eyes! I am so sorry for the problems you have endured with your eyes. I feel helpless as what to contribute. Totally don't know about the subject!!!! Love to you, Lori

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PS: You're so awesome that my 19 year old daughter even knows about you and your awesomeness! 😄 We think it's quite clear you were an English teacher based on your creative writings. 👍🏻

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@lorirenee1

@rwinney You have endured so much with your eyes, Rachel. I am so illiterate about eye problems that I have contributed nothing. However, I was by your side, hearing, and caring. I just do not have any knowledge when it comes to eyes. I guess that means that God has graced me with good eyes! I am so sorry for the problems you have endured with your eyes. I feel helpless as what to contribute. Totally don't know about the subject!!!! Love to you, Lori

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Hey @lorirenee1 Lori, like Rachel said, you are a champ when it comes to sending out loving and compassionate vibes to everybody. I don't think anyone contributes exactly how you do. And no one helps others more. You sure have helped myself and Linda! You know, you can't have understanding about every ailment. Look at me, I am like the poster child for being fit and healthy (don't tell the others though, okay? They'll kick me off of here). What the heck do I know of being sick in the myriad of ways people are here. Like you for example. I can't begin to imagine what it is like to live with burning feet to an 8 or 9 level for days, months, weeks in a row like you do. But even if one does not have a particular ailment or illness it's still possible to intellectually understand it to a degree if you want to, but when I read some of the various people's litany of issues I get mind-boggled. It's overwhelming. Nobody can take all of it in. That is why you guys are all heros, because you deal with SO MUCH. I admire you guys for the ways you all manage to carry on with the good fight. So just contribute the great things you always do and be happy you have good eyes for crying out loud! Love to you kid, Hank

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@kimcvi

Hello, yes it’s like a Charlie horse. MC is not suppose cause much pain and it’s suppose to be relieved with walking or exercising but the more I do the harder my muscles work and I have pain. My foot is all messed up due to the MC and if I do any substantial walking I wear AFO’s. I was hoping to connect with someone who is going through this but it is rare and none of my Dr.’s here at home can help me, I do a lot of non urgent messaging to my Dr. at the Mayo (he is Awesome along with his nurse)

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@kimcvi Is your diagnosis correct? We’re you diagnosed and a young age with this? I ask because myofascial pain is often misdiagnosed. There is a book called “Healing through Trigger Point Therapy: A Guide to Fibromyalgia, Myofascial Pain and Dysfunction” by Devin Starlanyl and John Sharkey. It is a bit technical and on the harder to read side. Devin is a physical therapist and runs a Facebook group called “Fibromyalgia, myofascial pain and dysfunction”. She has many downloadable files in links from that website with suggestions. If your diagnosis is accurate, some of her suggestions might still help you relieve pain, although the main focus of the group is evident from the title of the group. She has resource for bodyworkers, etc., too. I personally have some chronic myofascial pain and I’ve posted very specific suggestions in the chronic pain threads such as “pudendal nerve” thread and “pain in the butt – can’t sit down” thread about using exercise and certain dietary supplements to lessen pain and tension (at one time I had great hypermyotonic tension in both legs and all manner of myofascial pain and accompanying nerve pain in the hips and legs, too). The exercise and supplements were able to get me off nortriptyline for nerve pain and things are much better now. What I’m saying is that certain supplements and approaches you come across might help you – even though your condition is rather rare and unique. Good luck.

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Hi, I appreciate your suggestions. I’m having another Genetic test to find out which one of the MC’s I have. It is a mutation or depletion of the muscle gene. I asked if there is any supplements and there is nothing I can take to make my muscles work properly. Once we pinpoint which MC I have then we can properly treat it.

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@johnbishop

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, @jesfactsmon Hi, I have tried taking the alpha lipoic acid(ALA) in different ways to decrease my upset stomach. I found by eating food first then taking a 600mg capsule with more food decreased the degree of my upset stomach to almost zero. It is much more tolerable. In the future I may try a 300mg capsule twice a day. I saw online a recommendation of 600mg daily helped with neuropathy for diabetics. Although I am not a diabetic, I know 600mg daily provided benefits for me. I also read Acetyl L-Carnitine Amino Acid can provide relief from nerve pain. Has anyone tried the ALCA acid? I was concerned for a vegetarian diet but supplements are available. Apparently some dairy foods contain small amounts of ALCA.

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@avmcbellar

@johnbishop, @jesfactsmon Hi, I have tried taking the alpha lipoic acid(ALA) in different ways to decrease my upset stomach. I found by eating food first then taking a 600mg capsule with more food decreased the degree of my upset stomach to almost zero. It is much more tolerable. In the future I may try a 300mg capsule twice a day. I saw online a recommendation of 600mg daily helped with neuropathy for diabetics. Although I am not a diabetic, I know 600mg daily provided benefits for me. I also read Acetyl L-Carnitine Amino Acid can provide relief from nerve pain. Has anyone tried the ALCA acid? I was concerned for a vegetarian diet but supplements are available. Apparently some dairy foods contain small amounts of ALCA.

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@avmcbellar I am not on the protocol but I'd devised something similar based on research (I do not go so high on the B-vitamins). I get my healthy fats from diet as well as 1 tblsp of hempseed oil (which is all fat). I do take carnitine. I take 500 mg per day. I did not notice a decrease in pain that I would specifically attribute to that, but then again, I don't know for sure. I tend to have high triglyerides so more carnitine might help burn fats and lower triglycerides (and when you take ALA it is a fat; the center molecule at the fat burning cycle is carnitine). A small amount of carnitine (500 mg – 1000 mg) should be well tolerated. Carnitine can be metabloized to TMAO which, at higher levels, may not be good. However, that whole issue is complicated by way of some gut bacteria lower TMAO and some raise it. But, like I said, small amounts of carnitine might be helpful – especially if you don't eat much red meat (carnitine is and amino acid – but it is not one of the 20 common amino acids found in proteins – so vegetarians, in paricular might need a supplement. I used nutricost brand from Amazon. I also take turmeric, other flaviniods (especially in green powder supplements) and extra vitamin C, too.

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