Mitochondrial Disease

This is a neuromuscular illness where the neurotransmitters are affected. It is also called "jerky Stiff-person syndrome"
We found out after many years of progressing health problems that this is Mitochondrial disease. It causes hyprlipidemia, diabetes, edema, COPD, hypogonadotropic hypogonadism, hypertriglycerimia, migraine, calcinocis cutis, nocturnal muscle cramp, hyperekplexia (stiff person syndrome), hypertonia, central and obstructive sleep apnea, respiratory failure, chronic fatigue syndrome, myoclonic disorder, vitamins d defieciency, polyneuropathy, hypertension, multiple gland failures, liver disease, central balance disorder, dementia, heat and cold intolerance, and much more...it is genetic X-linked. His brothers have it and each is at a different level of poor health. Recently a diagnosis of Primary Myoclonus has been added.

Category:

Science & Technology

Tags:

• Primary myoclonus
• movement disorder
• movement syndrome
• spasms
• shaking
• tremors
• jerky stiff person syndrome
• medicine neurotransmitter

[DNALINDSEY]

My husband's Mother had this and it broke her hips. The only thing that helped her is valuim.

[WrightNightmare]

@DNALINDSEY Yes, Valium works wonders with helping this....

[DynoMama1]

I have SPS and I went to Barnes Jewish Hospital in St. Louis and they gave me IVIG that helps.  Do you take valium?

[WrightNightmare]

@DynoMama1 Yes...he has to take valium plus 23 other meds actually

[LedByTheLamb]

Need to test for Lyme disease through IgeneX. I have myoclonus and it's caused by chronic late stage Lyme and coinfections.

[WrightNightmare]

His doctor told me that he has much more than lyme disease. I am sorry that you are ill with it though.. thank you for your post.. Val

[DynoMama1]

@WrightNightmare He doesn't need all those doctors and meds. I would get to Barnes jEWSISH HOspital in St. Louis Mo. or to Mayo. They have come out with so much ways according to his body and treatments look above and you will see what I have to say. It has helped me a  lot. I know will just jump to loud noise or small spasm that I can stop myself by putting my feet firmly on the ground and sitting straight up in my wheel chair or chair.

[DynoMama1]

barnes jewish hospital in st. louis is where I go and I'm on valium, bacflin and treatments every month. Dr.'s in neurology is the ones that takes care of this. they have me on a regular time to take my medicine all day long and that helps. The treatments some months I have good months and others it may take 1 to 2 weeks to get in before I start having a good rest of the month. the treatments are IGIV I have had only 1 bad reaction 1 weak

[jaclynnnnnnnnnnn]

god bless<3

[JonathanJGuevara]

diseases are horrible, This makes me scared and sad. I wish you the best of luck.

[lhohneklab]

dont you better want to lie down / sit if you have got the spasms?

[TheKimsharp]

my Mother has Dystonia and she has more involuntary movement like you do, the sun light is one of her main triggers, I myself have found that when she has a spell, I rub her pressure points in her neck and it seems to go away alot quicker than if you just let her spasm! I am very truely sorry that you are having to go through this as well as for my Mother! I know it is hard on your body and it gets in your way at times, cause it does for my mom, chin up and maybe they will find a cure soon!