Hi,
Three years ago my 50 year old husband was very healthy, active, and happy. After a checkup prior to a boyscout high adventure trip, his PCP put him on Lipitor for a 220 cholesteral score. Immediatly he had all the 'bad' symptoms you find in the small type. He went off of the drug after 6 months. They put him on another Statin drug that lasted about 3 months. They tried another non-statin that did nothing. He gave up and just tried to improve his diet and exercise. That was 3 months ago.

Since then, his elbows and now entire arms have never recovered from the numb, tingling, weakness, & pain. He could not shake hands (especially w/ men who tried to prove something w/ their handshake!), open champagne, drive a car for long distances, etc. After 2 appts. w/ his orthopedic surgeon and an mri on his arm... he was told theirs nothing structurally wrong.

Finally, I did some research about statin drugs and their ability to remove the myelin sheath from the nerves exposing them to damage... i found a neurologist a few months ago and have seen him twice. My husband had a Nerve Conduction Study and and EMG. The results were severe axonal damage and moderate myelin damage - thus he was diagnosed w/ Chronic Axonal Neuropathy. ok. how did that happen?

The next week he had 2 back to back migrane headaches - 6 days of on the floor pain. but, they subsided right before the doc appt and he felt great!

The doc studied the blood test to reveal a low (279) B12 level and a high (17) homocystine level (supporting the low b12 diagnosis). So, he started a mego dose regimine of folate and b12 orally.

immediately, he got headaches again and his legs began symptoms like his arms but came on faster and more spastic (tight). he says he's afraid he'll wake up one day soon and not be able to get out of bed and walk.

He has extreme brain fog (he looks like someone turned off the light inside his head - literally!!!!). He's been chronically constipated for about 2 years (some say this is a symptom of 'something'). Yesterday his arm went totally numb again..

Earlier this week I did beg for another appointment saying i'm not willing to wait for 3 months to see if the b12 is working when he continues to slide downhill. (he's lying on the floor more than he's sitting up these days!!!) We will see the doc again this Wednesday. I'm hoping for at least a b12 injection.

Today I went ahead and scheduled an appt at the Florida-Mayo for late October.. just in case.

Maybe it is simple b12 deficiency... but i'm scared, he's scared. it's so frustrating to not know and try to go on with life like nothing is happening.

but i will!

Thanks for listening...

I am so sorry your going through this. The unknown is much harder than knowing, trust me, I know. My hubby has ms and I remember very well how many docs and tests he went through before he was diagnosed. It was fast for him and I hope the same for you too so he can get the treatment he needs.

That's just awful to take a med thinking you're going to get help, and have it make you that sick!

Glad you made the appt. Hoping you get some quick and accurate answers.

Let us know how it goes, k?

Welcome to NeuroTalk, the place to come for answers. If we don't have the answers (usually we don't!), we'll at least give you support.

I hope you both get answers soon. Has he had tests for vasulitis? It was one of the first things the PCP wanted checked because I have migraines, brain pain is more than a little debilitating.

I also take B12 injections when I need them, I give them to myself at least every six weeks or less. It also helps with the fatigue.

Welcome and I hope he feels better soon...

you and your husband will be lifted up in prayer tonite. I wouldnt wait either,,and i agree with you,,there is something wrong,,and the mayo clinic will not treat him,,,but they will diagnose him,,,,,,,,,,,,,,,,much love with empathy,,,,,,bobber

I hope our resident experts on drug toxicity, Mrs.D and Jackie66, weigh in on this.

I'm so sorry for your husband's troubles. He's lucky to have such a loving advocate and life partner.

Good Luck

Welcome to NeuroTalk. This subject has been a hot topic on many forums here.

This link
http://neurotalk.psychcentral.com/thread102924-2.html
post #12
is from olsen, who follows the statin research carefully. It explains how the side effects manifest and why.

To get over this damage, your hubby needs more than B12 and folate. He needs EFAs, (omega-3s) to rebuild the myelin, and also CoQ-10 in high doses to help improve the mitochondrial damage to the nerves. Acetyl Carnitine may help in this regard too, as it is often used for patients with chemo damage and damage from other drugs.

If you search the Peripheral Neuropathy forums for "statins" there are many many discussions there. Also at Medications, and Parkinson's, and even at Multiple Sclerosis.

Dr. Jay Cohen, MD has a book out on this subject:
http://www.medicationsense.com/
His website is always interesting to read and current.

Another good resource is:
http://www.spacedoc.net/

It is a shame your husband has to go thru this. A reading of 220 is not that high.
Here is a video to watch:
http://www.youtube.com/watch?v=i8SSCNaaDcE

Welcome to Neurotalk. I was once on that not knowing bandwagon(still
am, I guess). Its very difficult.

Make yourself at home and have a look around. There is great info to
be had here.

Im sorry you and your husband are going thru such a difficult time now.
I hope things get better soon.

Thanks for the info! He has read Duane Graveline's book Statin Damage Crisis and is taking all the supplements recommended (especially COQ-10). We have NO DOUBT Lipitor cause a 'trigger' somewhere in his body immediatly upon taking the drug to set this 3 year nerve destruction in motion. Why, how, i don't know. But, it can't be coincidence the way it all hit him and never went away during the 5 months on statins.
Thanks again!

Hello ididit, and welcome to NT! This is a great place. You will find a lot of support here.

I'm so sorry about what your husband is going through. I wish him the best.