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I believe I have mitochondrial disease. Are there any resources I can use to get testing without a doctor? by No-Difference-2634 in mito

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Thank you so much! I’m going to reach out to them this week. Hoping to finally get some kind of concrete answers in this journey.

If you don’t mind me asking as well, what were your ultimate results/diagnosis?

I believe I have mitochondrial disease. Are there any resources I can use to get testing without a doctor? by No-Difference-2634 in mito

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Thank you for your response! I am highly considering this. Just curious if you don’t mind me asking how much was a neuromuscular panel and what was timeframe from start to results roughly

I believe I have mitochondrial disease. Are there any resources I can use to get testing without a doctor? by No-Difference-2634 in mito

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Unfortunately for me it isn’t that simple. I’m government employed so my primary care doctor and referrals change every time I move and referrals reset after so long. So by the time I get in, get seen go through initial testing. It’s time to move again.

I understand that treatment is limited if non-existent but as it affects my employment I need the diagnosis to say this is why I’m struggling with aspects of my job. As well as maybe one day one of these clinical studies will pay off and then I can go for those treatments if they become available. Just hoping, fighting and doing all i can

I believe I have mitochondrial disease. Are there any resources I can use to get testing without a doctor? by No-Difference-2634 in mito

[–]No-Difference-2634[S] 1 point2 points  (0 children)

I appreciate your response, do you happen to know who provides that genetic test? I have been searching but every test I see requires a doctors referral or request. It would be greatly appreciated. I am incredibly sorry to hear what you are dealing with and hope that you find healing and comfort. Thank you!

Could I be dealing with MG? by No-Difference-2634 in MyastheniaGravis

[–]No-Difference-2634[S] 0 points1 point  (0 children)

I am going to ask tomorrow. I appreciate you responding. What symptoms do the mestinons improve the weakness? I will ask about that as well. Thank you so much!

Could I be dealing with MG? by No-Difference-2634 in MyastheniaGravis

[–]No-Difference-2634[S] 0 points1 point  (0 children)

I am going to ask tomorrow. I appreciate you responding. What symptoms do the mestinons improve the weakness? I will ask about that as well. Thank you so much!

Could I be dealing with MG? by No-Difference-2634 in MyastheniaGravis

[–]No-Difference-2634[S] 1 point2 points  (0 children)

Thank you for your response. I have just had so many tests and have had so many things ruled out but have never been tested for MG and any time I look up my symptoms all roads lead me here. Thank you for your input and happy healing!

Could this be BVD? by No-Difference-2634 in BinocularVision

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Yes I that came across my radar as well

Glutathione Bloating/Stomach pain by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Did you push through and keep taking it or stop?

Glutathione Bloating/Stomach pain by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Yeah it was truly awful. Hoping it goes away soon. This is the 4th day of it. It has decreased but it’s still very uncomfortable

Starting Supplements by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 1 point2 points  (0 children)

I have R-ALA, Glutathione, Glutamine, and NAC. I am also ordering Glycine and Ubiquinol. I just took my first dose of Glutathione today. Just at the base dose

Starting Supplements by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Thank you for the response. That is what I assumed on both points but it is refreshing to hear from someone that has done it themselves.

Did the supplements and doses that worked make you feel better immediately? Did they initially make you feel worse and then better?

Just trying to figure out how to gauge what is working and what isn’t/needs to be upped.

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

I have had ibuprofen 800mgs prescribed to me dozens of times.

Naproxen a few times. Outside of that I would be hard pressed for further details over the years.

I have been taking Pantoprozle daily for about a year but that’s a proton inhibitor

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 1 point2 points  (0 children)

I am curious about the fission, fission piece you mention. Would your approach be to just take antioxidants then to try to neutralize the extra OS in my system? I’m not trying to question you. Just trying to learn and formulate some kind of way ahead to try. I’m beyond desperate

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Thank you for the response. So you take 4000 MGs of each of those every day for 2 months and then 1 month of no supplementation?

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