Myopathy or neuropathy? What can I do?

[tyyosh]

To the experienced group: This is happening quickly, so I need to jump on this because I can't tell when/if the deterioration will stop. Can you point me in some directions whether this is muscles or nerves? I have ordered a bunch of supplements via next day air based on earlier conversations that probably cover some of both.

Late October - started Simvastatin 10 mg and took with CoQ10 30 mg nightly.

2 1/2 weeks ago - got tight muscles all over body. I realized later it was as if you were working out a muscle so that it got "pumped". Must really have been weakness.

1 1/2 weeks ago - stopped Simvastatin.

I was doing my normal job until this point.

1 week ago - lower esophageal sphincter muscle seemed to get weak, causing major reflux, even when sitting upright. One whole week of almost no sleep, pain, etc. until GI doc helped yesterday.

Last Wednesday - exam by neuromuscular expert who did nerve conduction tests and muscle electric tests. Everything looks GREAT, even though my strength is about 50% to what I knew.

All lab tests for CK, etc. come back normal.

Each day I seem to be a little weaker than before. For some reason, the changes are noticeable every time I wake up. Yesterday the little fingers and toes felt "loose" and harder to control. A bit dizzy and "not all here".

Should I be looking for a muscle biopsy, some other nerve tests, or anything else?

Thank you
Ty
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[uncle2blade]

tyyosh,

Sorry to hear you're having such a hard time. Things got worse for me after quiting statins. The thing I noticed most was the debilitating fatigue. All I could manage to do was lift myself up, and put one foot in front of the other. If it hadn't been for my wonderful wife I don't know what I would have done. Slowly with help from the good people on this forum and the supplements, I am slowly recovering. It's been ten months now since I took my last dose of Crestor, and tonight I'm going to a Christmas party. I don't know how long I will last, but just going is an accomplishment.

Here's to better days ahead, Hang in there,

Craig

[uncle2blade]

tyyosh,

I forgot to mention all my tests came back normal too, as you will find with most of the people that suffer statin drug side effects. That's why I think Drs dismiss our complaints and don't associate them with the drug. If there isn't a test they can point to, they just say it can't be from the statins.

Craig

[tyyosh]

The hard part for me is wondering if the degeneration is going to stop, or if one day I will wake up paralyzed or be unable to breathe. When did you notice it stop?

What supplements were key for you?

Thank you
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[harley2ride]

If you read most of the posts in here, you will find that many people have their symptoms reverse over time. There are quite a few of us whose genes were modified by these drugs, causing ALS, MD, and a host of other similar diseases, who will slowly continue to worsen. I ended up with MD due to Crestor use (I only took them for 30 days...) I had to take tons of tests over a 3 year period, and it ruined me financially and physically.

Someone can sue McDonalds for their coffee being too hot, but nobody wants to sue drug companies for ruining peoples health and lives...

[catspajamas]

I went to Mayos with all my symptoms...they put me through every neurological test they had, even a spinal tap..(some tests were painful)..after 5 days of testing all came up negative..but yet the muscle weakness/pain and neurapathy was still there...They suspected a drug reaction and mentioned that in their report to my Dr. My Dr didn't even read their report...I fired him....It took me getting shingles on top of everything else and going to a dermatologist that told me to go off everything...to find out it was the zocor that did my damage...In five years I have gotten a lot better...muscle wise..but still have the neurapathy and very painful feet....I think we are more educated about statins than dr's are...they keep wanting to push the pills...are they getting a kickback from the drug co's?....I would bet they are somewhere along the line....I don't think I would just accept your symptoms without going and ruling out ms, als and a host of other neurologcal diseases first.

[tyyosh]

I had MCV and EMG at neurologist, no problem. Going back Friday and will possibly look at MS, since many other symptoms have appeared in Dec, all of which can be associated with MS. Ugh.

Did you also do muscle biopsy and other muscle-specific testing? I would hope that somehow every case of myo/neuropathy can be traced to something that is out of whack, but am not sure.
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[catspajamas]

I didn't have a muscle biopsy because I also have fibromyalgia and it was hard to distinguish if it or the zocor caused my muscle problems..although fibro myalgia just makes your muscles sore...my mucles have since gone back to normal(if you can have fm pain normal)...my biggest problem with zocor was the nerve thing...I think it really messed up my nervous system....I know we want to find a definite answer but finding all your tests come back negative what other thing could it be besides a very bad adverse drug reaction....in this case statins....I have heard of so many people with the muscle thing...our niece had to stop taking zocor too...(I took 2 other statinns and zetia all with the same reaction) The muscles on my left side got so weak I started falling...Mayos thought I had a stroke but brain scans ruled that out...I have had a lot of painful tests all in the name of statins......what makes it worse was my total cholesteral was only 230 to begin with. The Dr should of never given me meds at all....Thankful to say the supplements advised here have helped me a lot.....(except for the nerve pain...that I still am working on) good luck