[debra lynn]

Aloha,

I am a new member to this site. I just got the diagnosis of SFN from the skin biopsy. I have lived in Kona Hawaii for 22 years and worked as a nurse in recovery room. I am now in north county San Diego with my Sister for the last 3 1/2 months getting medical care.
The pain started in the heels of my feet over 2 years ago and was mild. Ibuprofen took care of it and it didn't affect my daily living. Last april I noticed pain in the ball of my left foot that was burning and had the sensation of a "bubble" that i was walking on behind my left 2nd toe. I then saw my doctor and podiatrist. No cortisone shots worked. All tests run on me were normal. Everyone said my foot pain would just go away, just rest my feet and I would get better. But by Aug 2013 I was limping and couldn't take the pain anymore, so the end of aug was my last day at work. I stand 10 hours a day, 40 plus hours a week.
In Sept while on sick leave, I started getting nauseous with severe fatigue and my foot pain worsened with the left foot much worse. In November I saw another Doctor who looked at my and told me I had a neurological disease, probably MS. He asked if I had any symptoms of tingling in my arms. He ordered an MRI. I was distraught and devastated! That very night I woke up with tingling down my arms, that I had never had. The MRI was normal.
The end of November I then got on a plane with my husband, very sick and came to my sisters to get medical help I had lost 12 pounds in a few months due to nausea and severe fatigue episodes. I barely left the house. After a hospital stay at Cedars in LA I still didn't have a diagnosis, infact, told I didn't have a neurologic disease. But alot of tests were done. The only one that was off was an ANA of 160, previously 40 in sept. But further testing was neg.
I have since seen a really good rheumatologist that ruled out auto immune at this time. He was the one who suspected SFN and referred me to a Neurologist who specializes in it (In North county san diego) and did the skin biopsy.
Since I have been at my sisters I have had ups and downs, but have managed to put on a few pounds (I'm 5'8" and 121 now) and am not quite as fatigued. I am eating pretty healthy, have cut out sugars. The nausea is mostly gone. I am taking vitamin supplements regularly now. My C-reactive protein was 16.37 on dec 2013, my cortisol 22.6 at the same time. Still pretty sick then. B 12 was 293 back in sept and now in the 800's since taking supp.
In Nov the EBV Early antigen was 54.5 (normal 0-10) and the EBV IgG was 749 (normal 0-21), EBV IgM was 10 (normal) I did have Mononucleosis as a teenager.
I see the neuro this week. I got the results of the biosy over the phone. What pertinent questions should i ask? I want to get better and will do whatever it takes to get better. My parents both have diabetes. My A1c was 5.5. I am doing all that I can to stay positive. I still have the buzzing in my arms sometimes at night and my hands are sore, sometimes some muscles in my arms. My feet still hurt also. Is it possible to completely get better? I was a very active healthy person before this started. Any help would be appreciated! Mahalo!!!

[Stacy2012]

I cant really help, I dont have sfn but I wanted to say I hope you find answers and feel better soon, and hopefully someone will come along that has advice for you and post.



ps you will find more info by using the search box on this forum and type SFN or any word you want and you will find tons of help that way. Its an amazing tool even if nobody replies here.

[glenntaj]

That early antigen to Epstein Barr Virus suggests a possible reactivation of the infection--unless it reflects an initial infection with the virus, though the IgM titer does suggest that you had an infection in the past.

The pattern of antibody results with Epstein Barr needs to be looked at closely, as EBV infection/reactivation has been associated with the onset of neuropathies (sometimes quite acutely). In essence, EBV has often been called "Every Body's Virus" as over 90% of us have been infected with by age 30. Most infections take place in early childhood and look like colds; somewhat older people (teenagers) who get it for the first time often get the classic "mononucleosis". But once in the body, the virus is immortalized in pharyngeal tissues of the nose/mouth/throat and while the body's immune system usually holds it is check--the reason that people who've been infected will have that IgG titer for life--sometimes if the immune system is compromised the virus will reactivate and make you miserable.

Take a look at:

http://labtestsonline.org/understand...ebv/tab/sample

http://www.mayomedicallaboratories.c...nit_code=84421

http://cclnprod.cc.nih.gov/dlm/testg...25705E006E59B8

On the other hand, that B12 result before supplementation is far too low, and low B12 levels can cause neuropathy symptoms all by themselves--in fact, low B12 has deleterious effects throughout the body of which neurological symptoms are only one aspect.

With that result, and the high C-reactive result, sound like there may also be some inflammatory process going on. Can you tell use what other test results you have received? You can also look through this--

www.lizajane.org

--to check on what tests you may have had and to track them (this chart was made up to be about as comprehensive a list of testing for neural symptoms we could all think of).

[mrsD]

First thing a diabetic needs to do is get daily magnesium from quality foods, and/or supplements. Diabetics lose magnesium daily in the urine.

Here is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

and here is the website for SlowMag:

http://www.slowmag.com/

A C-reactive protein that high is very concerning. It indicates some massive inflammatory problem. There are studies showing Vit C can reduce C-reactive protein considerably.

Free Radic Biol Med. 2009 Jan 1;46(1):70-7. doi: 10.1016/j.freeradbiomed.2008.09.030. Epub 2008 Oct 10.
Vitamin C treatment reduces elevated C-reactive protein.
Block G1, Jensen CD, Dalvi TB, Norkus EP, Hudes M, Crawford PB, Holland N, Fung EB, Schumacher L, Harmatz P.
Author information
Abstract

Plasma C-reactive protein (CRP) is an inflammatory biomarker that predicts cardiovascular disease. Lowering elevated CRP with statins has reduced the incidence of cardiovascular disease. We investigated whether vitamin C or E could reduce CRP. Healthy nonsmokers (N=396) were randomized to three groups, 1000 mg/day vitamin C, 800 IU/day vitamin E, or placebo, for 2 months. Median baseline CRP was low, 0.85 mg/L. No treatment effect was seen when all participants were included. However, a significant interaction was found, indicating that treatment effect depends on baseline CRP concentration. Among participants with CRP indicative of elevated cardiovascular risk (> or =1.0 mg/L), vitamin C reduced the median CRP by 25.3% vs placebo (p=0.02) (median reduction in the vitamin C group, 0.25 mg/L, 16.7%). These effects are similar to those of statins. The vitamin E effect was not significant. In summary, treatment with vitamin C but not vitamin E significantly reduced CRP among individuals with CRP > or =1.0 mg/L. Among the obese, 75% had CRP > or =1.0 mg/L. Research is needed to determine whether reducing this inflammatory biomarker with vitamin C could reduce diseases associated with obesity. But research on clinical benefits of antioxidants should limit participants to persons with elevations in the target biomarkers.

PMID:
18952164
[PubMed - indexed for MEDLINE]
PMCID:
PMC2631578

free article available online
link to it is on this link at PubMed:
http://www.ncbi.nlm.nih.gov/pubmed/18952164

If you are taking a statin now, your PN may be due to it however.
Search "statin" here on our search engine and you'll find many medical facts that your doctor won't tell you or doesn't even know himself.

[debra lynn]

Aloha Gleentaj, Thanks for your info. Being that I am a newly dx SFN and am seeing my neurologist this week for the 1st time since that, what lab works do you think I should request? I know there are some labs I will get thru therapath diagnosts. but anything elso crucial to find out whats causing this? Mahalo, debbie

[debra lynn]

Aloha Mrs D, thanks for your info. I am not a diabetic that i know of yet. My parents both diabetes though. I stopped my statin ( crestor) in july. I had been taking 10 mg of liipitor for at least 10 years and switched to crestor 5 mg over a year ago.
I will see my neurologist for the 1st time since diagnosis of SNF this weed and want to know of any good questions for labs i should request be done to fine out whats causing the SNF. I do want a repeat of the CRP and poss repeat the ANA. any advise would be great. I know that I am waiting for auth from insurance for more Therapath Diagnostic tests for SFN. Mahalo for your info and help! debbie

[mrsD]

I am sorry I must have confused you with another newbie.

But with that long history of using statins... well, they are difficult on the nerve cells. They damage cells.

On this link are other links to the new photos of what statins do to cells and also a new YouTube about why and how statins are
toxic to cells.
http://neurotalk.psychcentral.com/sh...hlight=statins

It is unclear if you can undo what has happened so far.
Did you take or are you taking CoQ-10 to replace what the statins are lowering in your body? If you never did, now may be too late, but I'd try anyway. Qunol is a new form of CoQ-10 that has been solubilized to improve absorption. 100mg a day of this is about equivalent to 300mg of the older in oil types.

Some of our posters here who have been damaged by statins have improved some and others have not. Zocor appears to be the worst, with Lipitor closely following. (these are lipophilic meaning they go thru fatty tissue --like nerve cells--more easily than some others).

Magnesium seems to help many on our PN board. There is a lotion called Morton Epsom Lotion which works wonders. Not available everywhere yet, but at WalMart and online at Amazon.
Use just a little each day on a problematic area, and some will actually get into your blood stream for elsewhere use. Places with poor circulation respond the best. Oral should be a chelate and about 1/2 the RDA -- avoid oxide as it is a laxative and not absorbed appreciably.

Originally Posted by debra lynn

Aloha Mrs D, thanks for your info. I am not a diabetic that i know of yet. My parents both diabetes though. I stopped my statin ( crestor) in july. I had been taking 10 mg of liipitor for at least 10 years and switched to crestor 5 mg over a year ago.
I will see my neurologist for the 1st time since diagnosis of SNF this weed and want to know of any good questions for labs i should request be done to fine out whats causing the SNF. I do want a repeat of the CRP and poss repeat the ANA. any advise would be great. I know that I am waiting for auth from insurance for more Therapath Diagnostic tests for SFN. Mahalo for your info and help! debbie

[debra lynn]

for aloha mrs D, I stopped taking crestor last july, after thinking this could be the cause of my foot pain. I got no relief from doing that. I had been taking co q 10 for a few years with the statin and just got the qunol about a month ago. I will get the morton epsom lotion to try that. I had started hormone replacement therapy about 4 months before the 1st sign of mild foot pain started over 2 years ago. Also wondering about pos gluten intolerance? Thank you for your information!