Statins - Polyneuropathy - AND CANCER LIKE ANTIBODIES????

[FightingForMyMom]

Doc,

I love your website and your message board postings. Some of them so sad I just sit and cry. I can very much relate my Moms current physical status with a lot of your members.

Mom 68 yrs - very good health - Only medicine - Lipitor
Primary Physician misses weight loss/thirst warning signs - end result - ER - Sugar was 649 - never ever diabetic! Admitted to hospital. 3 days prior to being admitted - she was given a shot of prednisone after 2 rounds of antibiotics (avelox) didn't clear a "sinus infection" (when all along it was her extremely high sugar levels making her feel the way she did - my opinion)
Within 2 days, horrific leg pain/loss of coordination and movement of arms/hands/legs. Blood draw results show "cancer/Lymphoma?" - Bone marrow done - inconclusive, underarm lymph node removal done - inconclusive (that was 2 weeks worth/moved Mom to BIGGER hospital) First diagnosis - Guillian-Barre - started plasmapheresis, next day EMG shows its not GB. ?? Definite nerve damage though - they did sural nerve biopsy - Inconclusive. She had several rounds of IVIG with no avail. Actually made her worse - she had bandlike tightness around her chest and arms (still does) PET Scan showed several hotspots - lung biopsy - INCONCLUSIVE. Hospital sent blood work to Mayo - Result - ACh ganglionic neuronal Ab.S. is 0.08 (should be less than 0.02). The doctors explained that Mom has antibodies in her blood that is attacking her nervous system? Very much like cancer does.

After being in two hospitals for an entire month, rehab for two weeks so she could learn to walk again it has now been a year and she's STILL having awful days where walking is just a chore. The neurologists still say she has cancer but we refuse to believe it as all the biopsies show otherwise. Even the oncologist says she doesn't have it.

Could Lipitor have caused such an evasive uproar to a human body like this??? I mentioned atorvastatin induced neuropathy to the team of doctors but was shut down immediately!!! But words like Guillain-Barre, Lymphoma, Castleman's, Lupus, MS, sarcoidosis and many others have been ruled out. The only diagnosis she got is "inflammatory neuropathy".

Are there any other patients/victims out there with similar (especially the cancer scare) symptom???

I am a 42 yr. old mother of 2 sons and would use every breath for the rest of my life to solve/fight this medical mystery of my Mom.

Thank you,
FightingForMyMom

[Darrell]

We have had people on this board who seem to have statin-induced autoimmune reaction.

"Campbell recently has described five cases of polymyositis due to statin drugs, which appear to be due to causes different from the usual, more common types of muscle damage. Cortisone therapy was required in all five cases raising the possibility of statin pro-inflammatory effects in some people. Campbell proposes a previously unsuspected effect of statins on our muscle cell lipid / protein “rafts”, recently described, that results in a tendency to apoptosis (cell death and disintegration). It is these remnants of apoptosis that incite the autoimmune reaction and cause the inflammatory response."
http://www.spacedoc.net/statins_muscle_damage_cost.html

[adec]

"""I am a 42 yr. old mother of 2 sons and would use every breath for the rest of my life to solve/fight this medical mystery of my Mom."""

Great attitude, FightingForMyMom. That's the spirit. I'm very relieved that you found this place. I also hope this is the first step in your mom's recovery. I had the same attitude over a year ago, and have my mom fully back to the person she DESERVES to be. And I will never let the medical establishment take that away from her again. Both my mom and aunt started developing weird unexplainable, undiagnosable, and eventually misdiagnosed symptoms due to Lipitor. Even after a battery of tests, the doctors were left almost completely baffled.

Of course, the doctors were also unaware of something so crucial and elemental, that statins like Lipitor can deplete the bodies own natural reserves of Coenzyme Q10. As you get older, you have less And this CoQ10 decline in turn can wreak havoc in ambiguous and multiplicitous ways, as you already are finding out. I would ASAP get yourself to a store, and IMMEDIATELY get your mom a bottle of Coenzyme Q10, especially in gel form with vitamin E. Two doses every day of at least 100mg, of which there's no upper limit. And keep reading... and keep and posting, and please keep us informed.

[FightingForMyMom]

Thanks a lot for the comments! My Mom started the CoQ10 and L-Carnitine a few months ago, at the same time and "something" made her really dizzy, and with her already unsteadiness, and ALL she has been thru, it scared her and she stopped taking it. She's never had problems with her blood pressure and I read on another post that CoQ10 can lower BP, I wonder if that was what was happening, making her feel that way? I also read on another post that PT may make a patient worse by damaging the muscles instead of making them stronger. I am SO confused?!

[wmmcsharp]

Fighting For My Mom, if your Mother has Ach anti-bodies, then she has Myasthenia Gravis. MG is a very treatable condition. Get her to a neurologist ASAP!

[FightingForMyMom]

Thanks WMM - My Mom has been and still is seeing the neurology team at one of the biggest universities in Virginia. It sems they have a one-track diagnosis and that is cancer. We were just there in December, did another ct scan, but they KEEP verbally telling her that she has cancer and it just hasn't reared its ugly head yet. Imagine that news every single time! How sad and heartbreaking. They are referring the Ach antibodies as a precursor of cancer. Maybe another neurology team would be beneficial.

[sos_group_owner]

Hi FightingForMyMom,

Is your Mom taking any prescription drugs?
Any over-the-counter supplements?

Fran

[FightingForMyMom]

Hi Fran,

Mom is currently taking Neurontin 3x daily, Metformin and Actos once daily. Her "diabetes" numbers have been back to normal since she was released from the hospital. Doctors have said all along that her sugar levels will probably go back to normal and she won't have to take those meds forever. Another sign that it could have been Lipitor related? Hum?
Thanks,
Fighting For My Mom

[sos_group_owner]

Hi FightingForMyMom,

Neurontin for pain management?

Fran

[FightingForMyMom]

Hi Fran,

Mom's first hospital two week stay (local hospital) put her on the Neurontin for pain management, then when she was admitted into the bigger university (another two week stay, back to back), kept her on it and said the Neurontin would help improve the nerve damage as well.(?)

I just found out today from a recent scan or MRI done on my Mom that she has torn maniscus (sp?) in both knees now and will be having orthoscopic surgery for their repair. I now wonder if the PT for the past year may have done her more harm than good.

Fighting For My Mom

[FightingForMyMom]

WMM - Regarding the myesthenia gravis, I read where treatment would have been plasmapheris and IVIG, which she had both with no avail.

Fighting For My Mom

[wmmcsharp]

The front line drugs for Myasthenia Gravis are Mestinon and Prednisone. Your Mom might want to try those. IVIG and plasmapharesis are heavyweight treatments for MG so them not working does cast boubt on an MG diagnosis.

[harley2ride]

I know that since my statin injury, and Mitochondrial Myopathy diagnosis, I have become allergic to 5 different medications in the past 2 years. That and body temp has dropped 1 degree each year (now 96.0), and I get low grade fevers quite often. Seems like this stuff messes you up on a molecular level, or at least on the cellular level. I have been taking a supplement called MITOCH Power (which has coq10, l-carnatine, and some other stuff), NADH, and Lyrica for quite a few months now. I most definately have far less pain/cramping/spasms. but I do have mild shakes alot. Winter has always been my worst time, and this winter I've felt better than I did during last summer.

[vipergg22]

If you have nerve damage I get some benfotiamine and take that before I would ever take Nuerontin , that stuff is poison . I took for like a week and I was like a walkie zombie . I have severe pn and the benfotiamine helps quite bit with the nerve damage in my feet , I take 600 mgs a day.