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I have ME without the 'M', what is it? MELAS?

Discussion in 'General ME/CFS Discussion' started by amaru7, Apr 19, 2014.

  1. amaru7

    amaru7 Senior Member

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    Hi,

    I have encephalopathy-encephalomyelitis (brain diseases) but no myalgia with very low atp showing mitochondrial disorder that leads to my brain dysfunction and low energy output. But ME has myalgic in it means muscle pain which I do not have so it's probably not the right diagnosis.

    What could I actually have? Melas, or something like mitochondrial encephalopathy?
  2. WillowJ

    WillowJ Senior Member

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    hi, pain is not 100% required for ME. Most have it, but not all do.

    You can read how to diagnose in the International and Canadian criteria, and in the primers based from them (International, Canadian). There's also a pediatric definition, and a "revised Canadian" definition.

    Of course, you will want to read all of that in one sitting and then take the quiz! (joke)

    I am less familiar with the other diagnoses, so can't comment on those, just that there are a lot of diseases in the world that cause similar signs and symptoms to one another.

    Of course, I am not a doctor and it's customary for a doctor to perform a physical examination and various tests, to diagnose one with anything.
    rosie26, ahimsa, Mij and 1 other person like this.
  3. Cheesus

    Cheesus Senior Member

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    I don't have pain either. A number of people don't. ME is just a name, it's not necessarily an accurate descriptor. Especially if you consider that ME is actually potentially a number of different diseases and is currently poorly defined.
    amaru7, Jon_Tradicionali and A.B. like this.
  4. Mij

    Mij Senior Member

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    I've never had pain and I've been sick for 23yrs. I ache and feel sore off and on, but no pain.
  5. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    No pain here either in my 20 years.
  6. Forbin

    Forbin Forbin

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    Pain, including muscle pain (myalgia), is not a compulsory symptom for ME under the International Consensus Criteria (ICC). http://www.co-cure.org/MEICC.pdf

    Pain is one of four symptoms categories under the Neurological Impairment section.

    At least one symptom from just three of the four categories below is required, so pain could be absent.

    1. Neurocognitive Impairments
    2. Pain
    3. Sleep Disturbance
    4. Neurosensory, perceptual and motor disturbances​

    Even then, the pain need not be muscle pain (myalgia):

    --------------
    Although I had both flu-like muscle aches and joint pain early on and was actually diagnosed with "post infectious myalgia" at a time when M.E. (not to mention CFS) was unheard of in the U.S., I never considered it a major symptom compared to what else was going on. Much more significant in terms of pain were the "migraine" headaches and a sort of "inflamed" feeling just under the skin in certain areas where there was no apparent inflammation.

    Never-the-less, despite the name Myalgic Encephalomyelitis, "myalgia" is not a required symptoms according to the ICC.
    Last edited: Apr 19, 2014
    amaru7, WillowJ, Sushi and 2 others like this.
  7. amaru7

    amaru7 Senior Member

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    It rather should be named mitochondrial encephalopathy then imo, this would be more accurate
    Little Bluestem likes this.
  8. Cheesus

    Cheesus Senior Member

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    Perhaps you're right. There is currently a debate going on regarding proposed name changes to the disease. Click here to get in involved.
  9. Graeme

    Graeme almost there...

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    I've never had pain as the result of this disease either, and I also have borrelia and co-infections. I remember Byron Hyde poo-pooing the idea that I had Lyme based on the fact that I was not in pain from head to toe. But indeed I am incontrovertibly infected with TBI's. Cheney says 5% of ME/CFS patients don't have pain. It's probably just a matter of genetics, and I'm one of the lucky ones in this regard.
    Rlman likes this.
  10. Thomas

    Thomas

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    The Myalgic part of ME doesn't only refer to muscle pain. It refers to muscle involvement of many types (i.e. muscle weakness, muscle fatigue upon exercise, and other muscular dysfunctions).
    justy likes this.
  11. WillowJ

    WillowJ Senior Member

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    That would make sense; do you have a citation for this?

    The meaning from the word roots is simply muscle pain.
  12. Thomas

    Thomas

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    @WillowJ I don't have a direct citation but I'm pretty sure I read that Melvin Ramsey's intention behind using the word myalgic was to stress the importance of "muscle involvement" in many different forms.
    WillowJ likes this.
  13. Ambrosia_angel

    Ambrosia_angel Senior Member

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    How you actually been tested for melas? Melas out of all the mitochondrial diseases is the most known and most aggressive. On the other hand, other mitochondrial myopathies are a lot harder to diagnose and the symptoms are pretty vague and can come across as functional (migraines, Dystonia, fatigue, pain) for years before the person gets a diagnosis.

    Chronic fatigue (as a symptom) is considered apart of the mitochondrial dysfunctions but not a mitochondrial disease.
  14. justy

    justy Senior Member

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    Do you get flu like ache as part of your PEM? Do you get headaches, migraines or eye pain? what about joints?

    I am also lucky that I don't have widespread myalgia type pain - I know a lot of people are driven mad by this type of pain. It made me question my diagnosis, but I have since realised whilst I don't have fibro type continuous pain I DO have other types of pain that go along with an ICC M.E diagnosis - constant low grade headaches, severe eye pain at times and a horrible body flu like ache with crashes or over exertion.

    I also get low grade joint pain - usually on waking that resolves quite quickly during the day. For me the worse pain is the flu like ache - got it right now which is not a goo sign in the am for me.
  15. wastwater

    wastwater Senior Member

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    Hangover or flu like pain are still things you could take pain killers for so can be considered pain,its quite a diffuse pain not acute pain like say banging youre knee.
    justy likes this.
  16. amaru7

    amaru7 Senior Member

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    Hi
    No I've not been tested for melas syndrome and I've severe brain dysfunction (demented) and fatigue. Up to this date I don't have a clue what's going on with me plus I feel like crap most of the time. Tested my neurotransmitters lately and the Prof said "we rarely see such a result" I think he himself had no clue what's causing this. They came out all way below range. The dopamine, serotonin, GABA, adrenaline, nor adrenaline etc.

    I wish I had a clue what's going on with me as I seem to be different in that dementia case I've got, my brain dysfunction in that is more severe than the usual ME patient
  17. Ambrosia_angel

    Ambrosia_angel Senior Member

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    That's very worrying. I hope you get an answer. I've read of severe melas patients having really bad seizures and being told she was suffering from non epileptic seizure cause my trauma even though she had to be put in in hospital for around a year or more because they were so violent so that just shows how long a severe mitochondrial patient can suffer from before getting a diagnosis. To be honest if your really worried about melas and you think you have the symptoms then don't hesitate to get more help but at the end there isn't any treatment has far as I know.

    I really hope you get help. Have you seen any random improvements since your symptoms have started? What I know is that unlike some cfs patients, mitochondrial patients don't just see random improvements without treatment. I

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