All statements, claims and opinions on this message board are those of the respective authors and are not intended to be a substitute for professional medical advice. As comments are posted anonymously, it should be assumed that information on this forum comes from individuals who are NOT medical professionals and have received NO formal medical or scientific education or training. Comments and postings on this site are NOT moderated for accuracy of content as moderators are NOT medical professionals. Information on this site is for educational purposes only. You should not use the information on this site for diagnosis or treatment of any health condition. Always consult with a qualified medical professional before making medication, diet, dietary supplement, exercise, or lifestyle changes or decisions.
Posted: Sat Sep 26, 2009 12:11 am Post subject: Small Fiber Neuropathy
Has anyone seen information connecting statins and small fiber neuropathy?
My wife and I are enrolled in an aging study at USCF which is attempting to establish a baseline for myelin loss and aging. Part of the initial evaluation involved an exam by a staff neurologist. I described episodic neuropathy which involves the feet, tip of the tongue and the lungs. An earlier evaluation by a local neurologist found no nerve conduction problems. The staff neurologist suggested small fiber neuropathy as a possibility. It is apparently very hard to diagnose.
I stopped 40 mg/day of Lipitor in July 2007 after I complained of tired legs.
In June 2003 I started at 10 mg/day. This was increased to 20 mg/day in April 2006, to 80 mg/day in June 2006, and then decreased to 40 mg/day in September 2006.
My neuropathy symptoms began after stopping Lipitor in late 2007. In April 2008, the local neurologist determined that my B12 titer was low (high homocysteine and methylmalonic acid) and I've been taking a supplement since then. The B12 levels now look fine but the neuropathy persists.
Joined: 28 Nov 2007 Posts: 268 Location: granbury, texas
Posted: Sat Sep 26, 2009 9:14 am Post subject:
baumgrenze
Yes most if not all statin damages have some level of neuropothy symptoms and probably the most common form is small fiber or polyneuropothy. see the following studies:
Thank you for your prompt and informative response.
I am following up on the links.
I had found the Gaist paper some time ago. As I recall, it is a highly cited paper and following the citation trail is very time consuming and often not very rewarding because most of the publications are "pay per view."
I've been taking 2 mg/day of B12 since the April 2008 diagnosis. Only recently I changed the supplement to a B12/B6/Folic Acid product because I'd read that Folic Acid aids in the absorption of B12. The price differential at Trader Joe's is inconsequential.
Joined: 03 Sep 2009 Posts: 35 Location: Snoqualmie, Washington
Posted: Sun Sep 27, 2009 10:45 pm Post subject: Articles on Polyneuropathy
David, I also thank you for the links. I plan on buying some of the articles. anyone have a favorite?
I continue to have polyneuropathy two months out from stopping the Red Yeast Rice. It is better with the supplementation, but not entirely gone. The pain waxes and wanes and travels around. Feet, then legs, then arms then hands and so forth...burning, occasional transient numbness.
I went back to my primary after six weeks of this developing. When I first went there, we though it was vascular in nature and he referred me to a vascular clinic, which ruled out vascular disease. When I returned to my primary caregiver, a new-grad ARNP, he was nonplussed. It was apparent that I knew waymore than him, but he was very willing to work with me on this. I will appreciate getting some of the articles. I got the entire Golomb article...all 100 pages of it with 900 references.
I had him draw a CK to check if muscle damage. He wanted to check Vit D levels, and homocysteine. Will get results this week. I will see the naturopath the third week in October after we get back from being away for the first two weeks.
Joined: 03 Sep 2009 Posts: 35 Location: Snoqualmie, Washington
Posted: Sun Nov 15, 2009 12:02 am Post subject: Neuropathy/Myopathy
David, I am sorry to hear that you are not feeling too well, and I hope you are feeling better again, soon. I have been so appreciative of your helpful replies since joining this forum.
I am aware that the CK is not always accurate. I have not had what I would call muscle pain...no tenderness ever, this time around. I did, way back when I reacted to the Lipitor maybe ten years ago. I did have a positive CK back then, but not now. This time, the pain is more the sharp pain along nerve tracks...sharp, sometimes stabbing, sometimes burning. But as for muscle involvement...fatigue is the only symptom. I think that has more to do with energy production, so am suspicious of mitochondrial damage.
I am responding to the increase in the supplement dosage already, so that is good.
I will eventually get to a neurologist. Taking care of my 88 year old dad keeps me busy. He is having some eye surgery in a couple of weeks. When I get him over that, I will start thinking about neurology and get some info on the MD clinic at the University of Washington.
I have ordered Dr. Graveline's third book, plus two books from two of the other doctors. I have thusfar gotten Dr. Graveline's books from the library. But I realize that if I am going to have to do battle with the allopathic medical establishment, I am going to do it from a perspective of being very well informed on this subject. It has been an interesting four months dealing with my primary physician. In fact the entire year has been interesting, since I have lost confidence in allopathic medicine and am getting more help from my naturopath than my allopath.
Joined: 03 Sep 2009 Posts: 35 Location: Snoqualmie, Washington
Posted: Sun Nov 15, 2009 12:10 am Post subject: Thanks for the link.
David, I just looked at all the dates on the posts on this topic and realize that I was responding to your earlier post when you weren't feeling well. Thanks for the link! Nancy
Posted: Thu Mar 11, 2010 12:03 am Post subject: Re: Small Fiber Neuropathy
I hope this thread is not 'dead.' I am developing new information about my condition that may be of interest to others. I believe that the onset of my neuropathy and my use of Lipitor was only coincidental.
One benefit of the UCSF aging study I mentioned when I started this thread was a referral to Dr. Ann Poncelet, M.D., Professor of Clinical Neurology, Mr.and Mrs. David George Rowe and Stephen W. Rowe Endowed Chair for Teaching in Neurology at UCSF. She is one of the finest physicians I have ever met. She listened, asked questions, and then listened again. When I deviated from her organized approach to taking my history, she made note of my comment and came back to it later. She recommended a dozen tests. The last to be done, amyloid in abdominal fat, was the only one that returned 'positive' results. The slides were read both by a Stanford pathologist and Dr. Poncelet's favorite neuropathologist at UCSF with the same result. Amyloidosis is a complicated syndrome. We are still trying to place me in the spectrum of the disease. If people express an interest I will try to return and update this post as I learn more.
Here is a link to use if you want to learn more:
*http://www.amyloidosis.org/amyloidawareness.asp
Those of you who are suffering from neuropathy, please ask your physician to eliminate amyloidosis as a possible underlying cause.
I believe it is important that I came back to the forum to share this perspective. I hope it can be of use to someone else.
Joined: 03 Sep 2009 Posts: 35 Location: Snoqualmie, Washington
Posted: Fri Mar 26, 2010 12:38 am Post subject: Amyloid
No, the thread isn't dead. Thanks for the link. Went there and looked at the booklet about amyloidosis. Good information. Other than the neuropathy, which has improved since it's onset, I don't have any of the other signs, but I am going to keep that link, and should things change, I will make sure to bring it up!
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot edit your posts in this forum You cannot delete your posts in this forum You cannot vote in polls in this forum