Hey, I was reading your posts and your story sounds a little like mine. I was just wondering if you could tell me how things turned out. I'm really scared and trying to reach out to others who understand the fear of this. Thanks
I did some research on those antibiotics and there is mention of them changing some peoples dna. No difinite proof though. I think my progression is slow compared to some. Fatigue and weakness is my biggest complaint. See if you can get a muscle biopsy.
genetic testing came up with the glutaric aciduria. My mito is caused from environmental....I believe it is from being levaquin and cipro (antibiotics). I take a mito cocktail consisting of Q10, multi vitamin, super B complex, levo carnitine and mestinon. I have good days and bad days. Bad days out number the good days. There is a website UMDF.org that has tons of info. There are several groups on FB....mitocafe...adults with mito.
Hi, sorry it took so long for me to answer. I don't check in much. I am 11 years into the mito disease. I have mitochondrial myopathy complex 1 and 3. Possible glutaric acduria 2. IT took 5 years to get my diagnosis. I ended up at a university hospital with a MDA/ALS clinic. They did a muscle biopsy to get my diagnosis. I can try to answer your questions.
May 1st. Dr H/P appointment. She said I have multiple issues, but not ALS. She also doesn’t think it will morph into ALS. Some of my abnormal reflexes tell her that there is something wrong. She wants to figure it out. She’s leaning towards mitochondrial. So far all my blood work come back normal except for Antiproteinase 3 (PR-3) Abs
Note to self: my job transfer is putting me under. It’s way too strenuous. My neurologist told me I can’t get disability because I don’t have a diagnosis. Neuro never did strength test, but put 5/5 on report. Only tested knee reflex. Seeing PCP for help this week. Trying to get an appointment with Dr. h/P. Every part of me is weak. Work then sleep by 7:00. The fatigue is horrible . I have no energy to do anything, work takes everything out of me and more. My progression was slowly for years, but every part of my body.
Loss more muscle mass. Limbs are so thin.
Note to self: as my memory is bad writing here has help me keep better track.
My breathing again has seemed to progress. Morning and throughout the day I feel the shortness of my breath. I, periodically, have been getting late morning headaches.
Started limping on my right leg all last week; to the extent to where people are asking questions .
Fatigue this whole month has been bad. No energy after work, NONE! No cooking during the week. In bed by 8:00 the lastest.
Atrophy in my leg is Apparent. Very little definition is left. My arms are worse
Fasciculations in my legs are daily.
Note to self: memory getting worse. Reflexes not as hyper since weakness worse. RT arm cramps and weakness worse now. Make-up, brushing teeth, etc, must rest.....im not using RT arm as much because of weakness. First thing in the morning I have to take my left arm, to lift my RT arm up, to turn my floor lamp on. Hand dexterity Off. tendons showing... August neurologist appointment: neuro said not weak; all fine. Continue to exercise For strength the best I can. 1/17 Emg fine.. He thinks some type genetic 'thing' with just Hyperreflexia. He's not concerned about my breathing. Hard to do my physical job; neuro said no disability because no DX :-/
Pulmonologist believes chronic dyspnea is caused by chronic fatigue syndrome, generalized weakness, & exercise intolerance. Sent me back to neurologist. My breathing tests since 2013 are worse from my most recent, 2017.
Endocrinologist in 2013 & 2017 cleared me and sent me beck to neurology.
Note to self: still wondering how I can lose muscle mass, have flabby & soft muscles, indentations in certain muscles, unable to build muscles, and still have a clean EMG!?!? My limbs get skinnier and skinnier slowly, while my tummy gets flabbier & bigger :-( i was always in shape and worked out. How much atrophy has to be present for the emg to pick it up?
Hi, Thanks for your message. I can relate to the muscle fatigue vs weakness as that's how my doctors have been calling this. After using a certain muscles too much i just can't do something after wards. For instance, I cleaned the car the other day and my hands became stiff to the point where i could barely hold my keys...Crazy tremors with just the weight of the keys! so strange.. It's hard to give a complete picture of symptoms, so much has been going on over the last 7 years. Hope for the best Best of luck to you as well and i will let you know if any progress is made, just in case it might help you or others that are undiagnosed and searching. Cheers, Matt
Hi, I just posted a thread to summarize my symptoms. I thought that others may be interested as well. I am still working but i am not living a normal life. I am drained of energy, in a lot of discomfort especially in the morning, i cannot run around with my kids or play sports. I can't sit on the floor as when i support myself on my arms i shake like crazy. I also need medical help for my anxiety over this, it has been preventing me from being my normal happy self. It's been so long...