Old 09-18-2012, 04:48 PM #1 (permalink)
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Default als or mitochondrial myopathy?

I saw another neuro last week and he said I had muscle wasting and "relative" weakness in lower limbs. He also said my facial features indicated a myopathic process.

He is still excluding als on emg been clean last year but he said a plausible explanation could be mitochondrial myopathy. Needless to say I googled this and it didn't sound very good either.

Was wondering if anyone else on the forum had experience of this condition or has been mentioned to them.

Thanks david
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Old 09-19-2012, 03:29 PM #2 (permalink)
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Default Re: als or mitochondrial myopathy?

David, there is someone on here being tested for mi to chon drial my op athy. I believe his name is Luke. Also; at the bottom of this page, you will find other threa ds similar to what you are asking about. Click on those and it may have some an swers for you. You may also want to try N I H we bs ite or M A Y O.

Good luck,
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Old 09-19-2012, 04:26 PM #3 (permalink)
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Default Re: als or mitochondrial myopathy?

Hey there,

I'm in the same boat. I'm happy to chat with you more, and also feel free to click my name, then "View Profile," then from the Statistics tab, you can view all my past threads if you're interested. Disclaimer: I was in a bit of a panic when this first started, so forgive some of the earlier posts. My first EMG in March was clean, though it was just a 15-minute deal. I had a 90-minute EMG in August that showed issues. The issues could be neuropathic or myopathic, but based on other factors like my young age and the symmetrical, fairly uniform presentation of weakness, mito myopathy is a strong consideration. I have unusual eye movements which is a big feature of that disease, and also, my progression is relatively slow compared to your classic ALS case. Let me know what questions you have. It's good to be in touch with someone who may be traveling a similar path. Boy, this disease is so rare I think I've read every published abstract about it in existence - LOL. Good luck, hang in there and try to stay patient during the testing process - as with any of these neuro conditions, it can be lengthy and frustrating.

Also, while I encourage you to check with your doctor before beginning any supplements, I'm finding at least a subjective benefit from taking the following daily: 2 heaping teaspoons creotine monohydrate, 100mg coq10, one tab of vitamin B12 and B3 (sorry don't have the specific dosages of those on hand). I got it on Amazon and I'm taking very small dosages. I've felt more energy and especially a boost in mental focus, but who knows if it's really helping.

Good luck and stay in touch!
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Old 09-19-2012, 04:28 PM #4 (permalink)
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Default Re: als or mitochondrial myopathy?

Hi David. My doctors suspect that I have mito disease as well. I wrote you a bigger post but it got moderated. It should appear in a bit.
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Old 09-19-2012, 05:20 PM #5 (permalink)
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Default Re: als or mitochondrial myopathy?

Thanks Luke and Kimberley for your replies. Its very early days for me in terms of having any definitive diagnosis but been having neuro/muscular symptoms for nearly 20 months (see early posts). The neuro opinion on mitochondrial disease was based only on a neurological examination and have had bloods taken again CK and lactic levels. Also another emg still waiting for. He has referred me to a neuro in London that specialises in myopathies .
PS Luke what is 100mg coq 10?

Thanks again David
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Old 09-19-2012, 05:28 PM #6 (permalink)
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Default Re: als or mitochondrial myopathy?

Coenzyme Q 10
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Old 09-19-2012, 05:35 PM #7 (permalink)
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Default Re: als or mitochondrial myopathy?

Just read some of your posts Luke and certainly there are some similarities with my presentation mainly the weakness in neck muscles, muscle wasting being symetrical in arms and legs and the last few weeks I have had transitory periods of breatthlessness which had put this down to recurrance of asthma that I had in my younger years but now not so sure. The only thing that I have not had was issues with my eyes.
I have also sent you a friend request.
Thanks david
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Old 09-19-2012, 05:59 PM #8 (permalink)
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Default Re: als or mitochondrial myopathy?

Hey Victor,

I haven't had any specific workups for Mito as of yet, but as you might have seen looking at Luke's posts my GP suspects that Mito is a good candidate for me and is organising the necessary referrals to explore it. I'm a moderate weakness, muscle atrophy, loss of some reflexes, loss of dexterity amongst other things person.

Jenn
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Old 09-19-2012, 06:09 PM #9 (permalink)
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Default Re: als or mitochondrial myopathy?

In ALS, the EMG is considered the gold standard in helping establish a diagnosis. In mito, the gold standard is the muscle biopsy, where red ragged fibers are characteristic of a mitochondrial myopathy. I've been referred for this procedure, but it seems I'll be waiting a while to get seen. I look forward to hopefully getting closer to a real answer.
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Old 09-20-2012, 01:23 PM #10 (permalink)
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Default Re: als or mitochondrial myopathy?

i was diagnosed with mitochrondial myopathy this spring after a muscle biopsy. Still don't quite understand it all. I have weakness in my legs and arms. I have neuropathy in my feet which causes me to use a cane. I have been looking for a diagnosis for nearly 5 years. I am over 50 years old. The list of symptoms is long. My neurologist said it is not hereditary. No family history. I have a real problem with fatigue. I thought for a long time I was crazy. After 2 regular doctors and 3 neurologists I am getting some answers everything I have looked up has been conected to md websites.
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Old 09-20-2012, 01:29 PM #11 (permalink)
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Default Re: als or mitochondrial myopathy?

vickim, I'm very interested in hearing your story. I'm going to post on your profile.
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