Metabolic myopathy?

[kisekishiawase]

Anyone know about it or a community or where i can ask around get more info about it? I try to google but theres isnt much people talking about. Seems like its still new.
Its a disease of making energy/production to muscle.
Symptoms is pain over little exertion, cramp, fatigue/weakness.
Theres also other similiar myopathy, like mitochondrial, etc. Many types so its confusing.

 

[alex3619]

See for example (and this is paywalled) https://emedicine.medscape.com/article/1173338-overview

Mostly these things are just labels. With each case you need to understand the chemistry specific to that type.

If the IDO hypothesis of ME is right then ME might be a secondary metabolic myopathy. Its not primary as the IDO2 enzyme is not much expressed in muscle (not expressed directly in muscle cells, I think), but would be expressed in immune cells within muscle, and also other parts of the body.

These kinds of labels are not terribly important. The specific abnormalities that are lumped under such labels are what are important, and there are apparently a number of genetic disorders that result in metabolic myopathy.

 

[pogoman]

Anyone know about it or a community or where i can ask around get more info about it? I try to google but theres isnt much people talking about. Seems like its still new.
Its a disease of making energy/production to muscle.
Symptoms is pain over little exertion, cramp, fatigue/weakness.
Theres also other similiar myopathy, like mitochondrial, etc. Many types so its confusing.

Are you asking about necrotizing autoimmune myopathy, associated with statin and fibrate use but not always.
Also have you had a muscle biopsy and its results?

 

[kisekishiawase]

See for example (and this is paywalled) https://emedicine.medscape.com/article/1173338-overview

Mostly these things are just labels. With each case you need to understand the chemistry specific to that type.

If the IDO hypothesis of ME is right then ME might be a secondary metabolic myopathy. Its not primary as the IDO2 enzyme is not much expressed in muscle (not expressed directly in muscle cells, I think), but would be expressed in immune cells within muscle, and also other parts of the body.

These kinds of labels are not terribly important. The specific abnormalities that are lumped under such labels are what are important, and there are apparently a number of genetic disorders that result in metabolic myopathy.

Im having a hard time ingesting all of the myopathy and all genetic mitochondrial, etc stuff. Also because english is not my first language and i have no medical background.
Anyway what i see is theres many disease of muscle(or is it energy, atp..) with similiar symptoms so its confusing. Also many subtypes in. Metabolic myopathy, mitochondrial myopathy, and other myopathy
Also EDS due to faulty colagen. Will it cause same symptoms? Its confusing...cause i also have eds symptoms..and pots..but pain with little exertion. (Which doesnt seem relate to pots or eds)

 

[kisekishiawase]

Are you asking about necrotizing autoimmune myopathy, associated with statin and fibrate use but not always.
Also have you had a muscle biopsy and its results?

No i havent i just know about myopathy few days ago. I dont know necrotizing autoimmune myopathy yet. Theres seem to be many disease of muscle with similiar symptoms so its confusing

 

[alex3619]

Will it cause same symptoms? Its confusing...cause i also have eds symptoms..and pots..but pain with little exertion.

Many EDS patients have all sorts of unusual pains. Connective tissue is compromised all over the body. Many EDS patients meet diagnostic criteria for ME, but even more do not.

Do not be overly worried about this being confusing. The average doctor does not understand this stuff either.

 

[kisekishiawase]

Many EDS patients have all sorts of unusual pains. Connective tissue is compromised all over the body. Many EDS patients meet diagnostic criteria for ME, but even more do not.

Do not be overly worried about this being confusing. The average doctor does not understand this stuff either.

Well thats the problem. Im fighting alone. Doctor arent really helping. And im not even a genius...
So how am i going to solve this...

Yes eds has low muscle tone issue, similiar to myopathy but different from what i understand..i think....

Last time i mention about eds to the doctor he said: Dont think about that direction, its a hard uncommon disease..........

 

[pogoman]

No i havent i just know about myopathy few days ago. I dont know necrotizing autoimmune myopathy yet. Theres seem to be many disease of muscle with similiar symptoms so its confusing

There's not really a general myopathy site, just ones for specific muscle diseases like for muscular dystrophies.
I was diagnosed with a non-inflammatory myopathy 5 years ago and I never did find a forum for what I have.

They found it after I had high CPK levels in my blood showing muscle damage.
Then I had needle and nerve conduction tests by a neurologist to pinpoint the affected muscle then confirmed with a muscle biopsy.

You may have to do something similar to confirm a myopathy diagnosis.

 

[kisekishiawase]

There's not really a general myopathy site, just ones for specific muscle diseases like for muscular dystrophies.
I was diagnosed with a non-inflammatory myopathy 5 years ago and I never did find a forum for what I have.

They found it after I had high CPK levels in my blood showing muscle damage.
Then I had needle and nerve conduction tests by a neurologist to pinpoint the affected muscle then confirmed with a muscle biopsy.

You may have to do something similar to confirm a myopathy diagnosis.

I just had CK, CRP test came up normal not even high normal.
Next is neuromuscular. probably EMG or something. Om worried if its gone hurt?
Anyway im confused cause my muscle and joint still sore, hurt due to only little/minimal exercise but dont find the cause

 

[pogoman]

I just had CK, CRP test came up normal not even high normal.
Next is neuromuscular. probably EMG or something. Om worried if its gone hurt?
Anyway im confused cause my muscle and joint still sore, hurt due to only little/minimal exercise but dont find the cause

Normal CRP means no inflammation, that is how mine was.
There has has been more research on inflammatory myopathies than the non-inflammatory ones unfortunately.
The statin related myopathy I mentioned before is getting more research and is probably the most well known non-inflammatory myopathy at this time.

I won't claim the neuro tests will be pleasant, last one I had a few months ago I was glad when he was done.
But unless the doctor can find abnormal lab tests, doing neuro tests is probably the next step.

 

[FMMM1]

I just had CK, CRP test came up normal not even high normal.
Next is neuromuscular. probably EMG or something. Om worried if its gone hurt?
Anyway im confused cause my muscle and joint still sore, hurt due to only little/minimal exercise but dont find the cause

If you check out Ron Davis's presentation at the OMF Symposium then I think you'll find that he highlights the fact that his seriously ill son is fine according the current tests.

OMF are working on a series of potential diagnostic tests and there are others [e.g. https://pubs.rsc.org/en/content/articlelanding/2018/an/c8an01437j#!divAbstract].


Consider writing to your elected representative i.e. to request funding for ME/CFS research including the development of a diagnostic test.
I've written to the European Union Committee on the Environment, Public Health and Food Safety (ENVI) requesting that they lobby for funding for research into ME/CFS including the development of a diagnostic test [https://forums.phoenixrising.me/ind...ch-theyre-working-for-you.61516/#post-1003111].
Currently the ENVI Committee is lobbying for increased funding for research into Lyme disease and the development of a diagnostic test.
In 2016 the European Commission [European Union civil service] said [regarding Lyme disease] that "Both basic research and the development of new diagnostics, treatments and vaccines for Lyme borreliosis are funded by EU research and innovation framework programmes. The total EU contribution to such projects since 2007 amounts to EUR 33.9 million [US dollars]" [http://www.europarl.europa.eu/doceo/document/E-8-2016-008631-ASW_EN.html].
ME/CFS received no funding from the European Union [http://www.europarl.europa.eu/doceo/document/E-8-2017-006901-ASW_EN.html].

 

[jesse's mom]

Hi @kisekishiawase , I just saw this thread and so sorry you are suffering so badly! I hope you are a little better since you started this thread!

If for now you can stop worrying and looking for a medical professional to understand it might help you to stay as calm as you can, and follow what your body needs you to do. Eat well, look at the diets for healing the gut here on this board.

Make your beautiful music, and know that we care and are on your side! Help will come. There are so many new studies going on all the time I am delighted and look forward to a time that the researchers and medical community worldwide.

I hope you will know we care so much, Darling!

 

[Gingergrrl]

Im having a hard time ingesting all of the myopathy and all genetic mitochondrial, etc stuff. Also because english is not my first language and i have no medical background.

You are doing an amazing job and it is hard to understand all of this stuff even when English is your first language!

Do not be overly worried about this being confusing. The average doctor does not understand this stuff either.

Thank you for saying that, Alex, and it is my new "quote of the day" and it made me feel better.

There's not really a general myopathy site, just ones for specific muscle diseases like for muscular dystrophies.

I had a similar experience in 2015 when I saw a Cardio who was a POTS specialist. He said without question that I had POTS but that there was clearly something else going on that was weakening my muscles including my breathing strength. He said, "it's as if you have muscular dystrophy except of course that you don't". I was happy in the sense that he was the first doctor to pick up on the level of muscle weakness that I was having but it was also frustrating b/c he had no concrete recommendations and I still had no diagnosis. (In 2016, I discovered that I had the LEMS autoantibody and that it was the closest match to my symptoms yet but the amount of research and digging to get to that point took several years).

Next is neuromuscular. probably EMG or something. Om worried if its gone hurt?

I had an EMG and nerve conduction test in 2016 and while it is not pleasant, it is definitely do-able.

I am doing better the past couple months after doing rituximab in July.

This is absolutely amazing news @pogoman and I was so curious how you were doing after your last Ritux infusion. Thank you for the update. I had my 6th Ritux infusion in Aug (which completed the original series of six) and then had my first maintenance Ritux infusion in early Dec. Because I remain in remission, we pushed it out to a 4-month interval (vs. a 3-month interval for all the others). If this continues, we might try to push it out to a 5-month interval in the new year.

I saw my neurologist earlier this month, he also noticed my improvement and ordered rituximab treatment for next month.

Yay, all great news!

 

[pogoman]

This is absolutely amazing news @pogoman and I was so curious how you were doing after your last Ritux infusion. Thank you for the update. I had my 6th Ritux infusion in Aug (which completed the original series of six) and then had my first maintenance Ritux infusion in early Dec. Because I remain in remission, we pushed it out to a 4-month interval (vs. a 3-month interval for all the others). If this continues, we might try to push it out to a 5-month interval in the new year.



Yay, all great news!

Good to hear!! I hope things continue to improve

I was really having issues with flexeril trying to find a dose that worked but wouldn't make me all drugged up in the morning so along with other physical ailments I haven't been online like I used to.
But its gotten much better this month.
As my neuro is retiring this month, he said a new neuromuscular specialist will take over which I have hopes he will be more proactive.
I also am seeing the geneticist up in LA Kaiser next month, not a phone consultation so maybe he has news or new tests to try.
I also broke my prosthetic leg carbon fiber socket in November.
But my prostheticist copied the newest socket I had that broke two years ago, picked it up a week later and it fits much better than before.
That also led to deciding its time to replace the whole leg and socket, had to see the new Kaiser head of physical medicine and he approved everything so I start that process next month.
Lot of also's

 

[Gingergrrl]

Good to hear!! I hope things continue to improve

Thank you so much and to you, too!

As my neuro is retiring this month, he said a new neuromuscular specialist will take over which I have hopes he will be more proactive. I also am seeing the geneticist up in LA Kaiser next month, not a phone consultation so maybe he has news or new tests to try.

I have probably asked you this before but cannot remember the answer ... Do you live in LA and if so, do you have a good neuromuscular specialist here? I gave up back in 2016 in trying to find one. (Although if your Neuro is through Kaiser it would not pertain to me). It sounds like you have some good doctors in place.

But my prostheticist copied the newest socket I had that broke two years ago, picked it up a week later and it fits much better than before. That also led to deciding its time to replace the whole leg and socket, had to see the new Kaiser head of physical medicine and he approved everything so I start that process next month.

Wow, that is a lot to deal with but I am hoping that it all works out smoothly and for the best.

Lot of also's

Don't even worry and my posts are a series of convoluted "also's" as well!

 

[Mary]

Several posts have been moved from this thread to a new one here: https://forums.phoenixrising.me/index.php?threads/lingering-statin-side-effects.62640/
as they were getting off-topic

 

[pogoman]

I have probably asked you this before but cannot remember the answer ... Do you live in LA and if so, do you have a good neuromuscular specialist here? I gave up back in 2016 in trying to find one. (Although if your Neuro is through Kaiser it would not pertain to me). It sounds like you have some good doctors in place.



Wow, that is a lot to deal with but I am hoping that it all works out smoothly and for the best.

Yeah I'm on planet Kaiser down in SD county so everything is thru them.
That has its pros and cons, they are finally catching up with the newer diseases as newer specialists are hired.
My old neuro was head of department, willing to test for things but conservative in treatment.
He was much better than the one before him, that one wouldn't do any treatment at all even after the biopsy.

Kaiser has a Metabolic Center in LA, the Dr I see there is also a USC geneticist so is pretty well versed in the genetic diseases.

A year ago I would be dreading going thru all the appointments I've had simply from being sore and tired getting up that early, the rtx has definitely improved things

 

[Gingergrrl]

Yeah I'm on planet Kaiser down in SD county so everything is thru them.

Thanks for reminding me (and hopefully I will not ask you this again ). I hope that Kaiser is being good to you.

Kaiser has a Metabolic Center in LA, the Dr I see there is also a USC geneticist so is pretty well versed in the genetic diseases.

This sounds very promising

A year ago I would be dreading going thru all the appointments I've had simply from being sore and tired getting up that early, the rtx has definitely improved things

I totally understand and have had amazing improvements from RTX as well. I am very happy for you and may they only continue to get better.