necrotizing myopathy

Hi there Jerry

This must be a very stressfull and confusing time for you...I can relate. Having a doctor shrug his shoulders and say "Honestly, I have no idea how to help you" is seriously nerve-wrecking.

What I can tell you about the condition is the following:

Necrosis - is the accidental death of cells and living tissue.

Myopathy - is a neuromuscular disease in which the muscle fibers do not function for any one of many reasons (In your case, most definately due to the Necrosis).

Can you tell me what part of your body is affected?

The way forward is to try and identify what is causing the Necrosis as it can be anything from Genetic disorder, Injury or even Venom from a spider-bite or snake-bite (A lot of snake and spider venoms causes necrosis in order to digest it's prey).

Depending on the outcome of this, it would be easier for a Doctor to prescribe a treatment for avoiding further Necrosis.

I would suggest that:

1. Work with your doctor (or get a referral from your current doctor of a colluege that might know more about the area), to identify the cause of the Necrosis. This most likely a very urgent situation as the Necrosis can be on-going (Depending on the cause).

2. Once the doctor has identified the cause, he/she can work on halting the current Necrosis and avoid any further spread.

3. You will more than likely need to see a specialist (depending of the are affected) to reabilitate the affected muscles.

I wish you all of the best in this process! And if you need anything at-all, feel free to contact me.

This all sounds very much like my statin experience (Simvastatin).  

My doctor doubled my dosage to 60mg/day and I began to develop weakness, over months, that became debilitating.  I could not even raise myself out of a squat without help.  No wonder I failed my treadmill stress test.

Turns out that I had a classic case of Rhabdomyolysis.  If you have ever had a cardiac enzyme blood test (CK), you do not want a result of 11,680.  (That should mean I was actually dead.)

He took me off Simvastatin and I returned to normal in 1 month.

Shortly after that, the TV warnings began to appear.

Statins are a very dangerous family of drugs.  My current (Pravachol) seems less of a problem.  Different formulations, different results, according to my neurologist.

New round of warnings from the FDA.  (I get their weekly newsletter.)

Mojo, in Poway, CA

I have a family member with the same disease.  Did you have any other treatment or was taking you off of the medication the only thing needed.

hji we are in Australia wife has the same condition been put on prenisalone also havingi intragram at hospital this has been brought about by statin drugs this is rare condition also found another in new south wales VITAMIN C DOES HELP its a long recovery ........ mr and mrs crabb

pls check out cholestrol drug wars on web there is a massive class action in America AGAINST PHARMECUTICAL COMPANY PLS DIRECT ANY CORRESPONDENCE YOU MIGHT HAVE TO ABOVE EMAIL WIFE IS HAVING TREATMENT STILL HER CK LEVEL WAS 3THOUSAND 300

I also have a necrotizing myopathy, my Prof. at RPA hospital told me I had 3 mths to live in 2007 & I'm still here. They believe mine is generic & affects me from the waste up, they tried me on prednisone but it didn't help. I don't know why I'm still here, they gave no hope & no medication to help & most Dr.'s are frightened to even talk about it. I did find that large doses of magnesium seems to help with cramping & it also helps build muscle, I also tried working the muscles hard which made it worse so I stopped working & tried doing next to nothing most of the time & just a half hour walk of an afternoon & the relaxing of the muscles for long periods seems to help. With me, everything we know about building muscle works opposite to everyone else, the less I do the stronger I am. Good luck with it & get your GP to refer you to a Neurologist as soon as possible so you can find out about it. Don't wait, do it now.

I had ck number of 13000 from prevastatin drug , my strength diminished slowly over 3 months and then totally gone couldn't walk or even move my arms! Doing ivig and methotrexate and pt strength is coming back slowly

Go yo mayo in Rochester mn

Ht all you may have a gene called mthfr gene half of population has it

Doctors are limited to what they know and how to treat in australia info comming from john hopkins research centre

Hi there my wife has been on 15 medications that are class actions in america eg lipitor lexapro prenisalone nexium keflex methotrexate etc etc etc it has been a very traumatic time we were seeking a personel injury claim BUT HAVE HAD to stop due to no doctor railling on each other it has cost us dearly we have over 1000 medical notes I have notified one nation here AOLITCAL PARTY who is trying to get senate enquiry going in 2017 the tga are well behind the fda in notifying consumersof dangerous side effects THE TGA HERE IN AUSTRALIA ARE 4 YEARS BEHIND a private members bill to upgrade industry standards in Australia is proppossed Abit late to those sufferring BUT I HAVE TO START SOMEWHERE THEY WERE TOTALLY SHOCKED WHEN I GAVE THEM INFO ON WIFE PRINTOUT FROM WESTERN AUSTRALIA INSTITUTE OF NEUROSCIENCE THEY JAVE FOUND 20 PEOPLE LIKE MY WIFE SINCE 2000 TO 2015 WITH THE SAME COMPLAINT .... NO MY WIFE IS NOT AN ISOLATED CASE

Pls pls search the net on your medications i found out so much on there and this is why i know so much on subject Our doctors and local mps dont like me DONT ACCEPT WHAT YOUR GIVEN BY DOCTORS DO YOUR OWN RESEARCH THEY ARE PAID BY BIG PHARMA FOR EVERY DRUG THEY PRESCRIBE DONT BELIEVE ME . Check out whistle blowers on utube PS IT NEW YEARS EVE HERE IN AUSTRALIA TAKE CARE GOD BLESS

Hi get yourself nto a natro path doctors no what it can do believe me or get yourself onto co q10 this helps as statins cut of line of support for cholestrol plus vitamin c wife has been through a lot SHE IS THE WORST CASE THEY HAVE SEEN IN SOUTH AUSTRALIA of necrotyzing auto immune myopathy did not respond well to intagram prenisalone and privigen almost collasped in elevator and kiosk at hospital been a long 4 years she had chest pains like a heart attack but was put down as re flux 

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I have just been diagnosed with necrotizing Myopathy
My Statin was stopped. Quite weak I am on Predisone. And due to start Methotrexate and Three days each month for six months of IVs. My consultant in London has only ever seen 13 people in 15 years with this condition. It would be good to have a forum to talk to other people.