B2 riboflavin / long term muscle issues now becoming very hard to walk

[DanCraig808]

Hello community I have been dealing with a muscle condition since I was 19. I am now 49 y/O male. At age of 19 I was practising the guitar and noticed slight twitches at the top of my forearms. Over the coming weeks they started popping up In different parts of my body. I was very active at the time so I just kept playing sports and guitar and other thing, until slowly over the years I was unable to do any of them. The weakness is now beginning to make it difficult to walk. Every muscle in my body is affected and weak.

I've seen too many neurologists and metabolic specialists to mention. One said my homocysteine levels were elevated long ago and apparently low B2 levels can cause this.

I try to supplement it. Different doses different brands yet the same thing happened every time. I wake the day after taking it feeling much weaker and overall just disgusting. I experimented with foods high in b2 I ate a bag of spinnach. Woke the next day feeling exactly as if I'd taken B2 tablets.

I saw a geneticist 9 years ago and he diagnosed me with Glutaric Acideria type ii adult which is a rare condition affecting muscles and b2 is the only treatment for it. ..I saw that doctor again last week and upon repeating the blood test he said I was misdiagnosed and do not have that condition so I am back to square one.


Does anyone else have a problem reacting to B2 in this manner ? Thanks for reading ..dan

 

[linusbert]

homocysteine levels were elevated lon

homocysteine usually is treated with b12, folate and b6. and some form of cholin, i recommend egg yolks.
that b2 is used mainly for treatment i read the first time. its somewhat related to b6.
basically methylation is somewhat broken when your homocysteine is high. you need methyl donators like cholin, and a methyl group buffer like glycine. and of course b12, b6 and folate.

I've seen too many neurologists and metabolic specialists to mention.

did they test for metabollic myopathies, did they actually test for anything? as you write you seam to be in rather good shape for myopathies, usually drs dismiss myopathy if you are young and dont crawl in in a wheelchair.
but there are adult forms of myopathies.

acylcarnitine profile, organic acids, amino acids should at least have been done for blood and urine works. if not do so.


check out the channel of chris masterjohn , he is doing vitamins and metabolism a lot.

 

[DanCraig808]

homocysteine usually is treated with b12, folate and b6. and some form of cholin, i recommend egg yolks.
that b2 is used mainly for treatment i read the first time. its somewhat related to b6.
basically methylation is somewhat broken when your homocysteine is high. you need methyl donators like cholin, and a methyl group buffer like glycine. and of course b12, b6 and folate.


did they test for metabollic myopathies, did they actually test for anything? as you write you seam to be in rather good shape for myopathies, usually drs dismiss myopathy if you are young and dont crawl in in a wheelchair.
but there are adult forms of myopathies.

acylcarnitine profile, organic acids, amino acids should at least have been done for blood and urine works. if not do so.


check out the channel of chris masterjohn , he is doing vitamins and metabolism a lot.

Hi yes I had acelcarnatine test and they said I had Glutaric Acideria type ii adult onset. 9 years ago that was. Last week upon repeating the test they now claim I don't have that metabolic disease. And I am back to square 1. I've had every blood test I can think of over the years. But now back to being undiagnosed. I have had sentivity to strobe lighting. Even slight flickering like and I get the heck out of the room asap.

 

[hapl808]

Hi yes I had acelcarnatine test and they said I had Glutaric Acideria type ii adult onset. 9 years ago that was. Last week upon repeating the test they now claim I don't have that metabolic disease. And I am back to square 1. I've had every blood test I can think of over the years. But now back to being undiagnosed. I have had sentivity to strobe lighting. Even slight flickering like and I get the heck out of the room asap.

No idea, but some similar symptoms. Mine was onset during a trip to SE Asia, so I always assumed I got some virus or parasite or whatever. In recent years, I've also wondered about the vaccines I received prior to the trip, as some also can have neurological adverse effects.

I can't walk anymore without assistance, have many environmental sensitivies, and any cognitive or physical exertion leads to delayed crashes.

 

[wolves2626]

I am in the same position. my whole muscles get rock solid. I could not walk far 10 minutes maximum at a time and 4k steps daily which means a 40-45 minutes movement a day that is not enough to work and live. my legs and arms turns into a cement after movement. I was tested for myopathy with antibody testing etc. also both muscle and skin biopsies. muscle biopsy showed nothing and skin biopsy show decreased amount of muscle fibers then I got diagnosed with small fiber neuropathy which is not directly related with my mobility movement problem. I could barely work and live now.
have you ever get an emg test or biopsies that I mentioned ? do you have only stiffness, weakness in muscles or pain and burning along with it?
did you get tested for mg myesthenia gravis?
at 19 or before any illness or infection of any sorts you got?
any sort of autoimmunity in family?
hope you will find the real source of it.

 

[lenora]

Hello @DanCraig808......Welcome to PR, but sorry about your unsolved problems. Boy, do we ever hear a lot about them; part of our lives, sadly.

Yes, I would take your Vitamin 'B's' seriously, especially via food. I'm not an egg lover, but will eat egg tortillas, beets and beet pickled eggs, a hard egg, in other words. I have to.

How is your mg. supplementation. Too little mg. can also cause muscle twitching to downright muscle pain. I tend to take mg. taurine, but there are other types....some can even be used as laxatives, if necessary. i.e. mg.

There is also a drug called pramipexole that can be used for muscle disturbance. I'll take l/2 tablet and it soon settles down. Be careful in your case....I use it about once/mo., if necessary.

I do know what you mean about the doctors not being able to help. It's a fact of living with an illness of so many symptoms....we find that out. I'm sorry that you're deteriorating and it must be scary. If we can help, we most certainly well. Feel better and stronger. Yours, Lenora

 

[linusbert]

Hi yes I had acelcarnatine test and they said I had Glutaric Acideria type ii adult onset. 9 years ago that was. Last week upon repeating the test they now claim I don't have that metabolic disease. And I am back to square 1. I've had every blood test I can think of over the years. But now back to being undiagnosed. I have had sentivity to strobe lighting. Even slight flickering like and I get the heck out of the room asap.

that definitely sounds like a genetic problem. did you do gene testing? some WGS or 23andme at least?

these doctors... metabolic disease can show in urine and blood depending on what state the system is and what diet you are doing. if you adapted your diet to whats beneficial for your disease, the tests might come back normal. so the tests can be indeed be "normal" and in some crash situation absolutely not normal. so these tests need to be repeated and should be done in a bad state. - depending on the disease of course.
but the glutaric acideria type ii is a genetic disease, actually they should confirm it with genetic testing.

 

[Violeta]

The reason I bring up COmplex II is that in the facebook group for mitochondrial nutrients, Chandler Marrs linked a study about Riboflavin and Complex II.

Although I don't know how or why taking B2 would make you feel worse.

Unless it's more complex III and taking B2 pushes too hard causes a worse backup at Complex III.

Complex II Deficiency

• Long Name: Succinate dehydrogenase deficiency.
• Symptoms: Encephalomyopathy and various manifestations, including failure to thrive, developmental delay, hyoptonia, lethargy, respiratory failure, ataxia, myoclonus. ...
• Cause: Probably autosomal recessive

Myoclonus refers to sudden, brief involuntary twitching or jerking of a muscle or group of muscles. The twitching cannot be stopped or controlled by the person experiencing it.