Still no diagnosis. Now what?

[mgguy]

I have had stinging/burning in both feet and sometimes in hands even after stopping Lovastatin 9 months ago. All blood tests are negative except for positive indicator for RNP (Riboneucleic acid protein) antibodies. Rhumatologist said that test result is no big deal, and he has ruled out immunity related causes for my symptoms, including HIV, syphilis, luus, Lyme, diabetes, B-12 deficiency, and B-6 toxicity. Nerve conduction tests shows nothing abnormal except somewhat slowed nerve impulses through both ankles, which is no big deal (and wouldn't explain why I have occasional tingling and stinging in my hands).

So now what do I do? Nothing, and just wait to see if it goes away, or (hopefully not) gets worse? There is one last thing I need to have checked--a rash in my right armpit and in my groin that looks to me like pictures I've seen of the "classic target" rash of lyme disease (which is a bacterial infection). I am going to my primary physician to have it looked at on Thursday to see what he thinks. I think I could still have Lyme disease even though the blood test for Lyme was negative. My understanding is that there is a very high false-negative rate for this test--i.e., not being able to detect Lyme when you really do have it. If I have it, it would be considered in late stage, so treatment with antibiotics would likely not be very effective. If doc says rash is not due to Lyme, then I am left without diagnosis of anything. I guess that I could now just rely on statin maybe still being the cause, but having no improvement after 9 months after withdrawal of drug makes me doubt it (though I have read in many posts in this forum that it can take a very long time to heal from statin-induced nerve damage).

Does anyone have any reaction to this or any advice they can give me? I would really appreciate some feedback, and any tips for treatment of symptoms would be great. Thanks.

Robert (aka MGguy)

[poohhel]

mgguy: I have been having the same burning/numbing/and pain in my ankles/feet and hands/wrist. To the point I cannot walk by end of day... and then even at rest the shooting pains and burning keeps me restless and not getting much sleep. My NVC and EMG tests showed beginning stages of carpal tunnel in my wrist and hands but only on left side (Bullsh__!, my right is just as bad) But the neurologist said no real evidence of anything in my ankles/feet... and my hands aren't really that bad either... BUT I TOTALLY DISAGREE!! However, my podiatrist said exact opposite ... He said I am showing evidence of neuropathy and nerve damage; He also said often these test do not show the tarsal tunnel which is like carpal tunnel only in the ankles/feet... because of the way the test are read... Abnormal results in both feet read as normal since there is not difference from right to left... so basically it is not in my freaking head. I have also been diagnosed with 5 pinched nerves in neck and back but MRIs, CT Scans, etc. show no reason for the pinched (damaged) nerves ... why ???

Bottomline- Statins can cause nerve damage and neuropathy... And NERVE DAMAGE is what I am experiencing in wrist/hands; and ankles/feet; and neck and lower back... Regardless of what the test say...It is NERVE DAMAGE and my GP and Podiatrist agree that "medications" can also cause the NERVE DAMAGE; i.e. my tarsal tunnel syndrome.

I am actually scheduled for two Tarsal Tunnel Release surgery's - one in October and then one in December...

Do a Google for Tarsal Tunnel Syndrome or Tarsal Tunnel Release if you want more information. I am just hoping the damage is not already permanent.

[adec]

I agree that these are likely cases of statin-induced neuropathy. After thorough testing, doctors will perhaps tell you there's little that can be done to regenerate nerves. Meanwhile through alternative supplementation (i.e acetyl l-carnitine, acetyl l-carnitine arginate, b-12 methylcobalmin, idebenone, alpha lipoic acid, alpha gpc, bacopa, mucuna puriens, ashwaganda, L-Huperzine, deprenyl, hydregine etc.) it's theoretically possible to induce nerve growth factor, to decrease and perhaps eventually reverse degeneration.

NGF are proteins that allow protecion of nerve cells and promotes their differentiation/division or development. Mutations of these proteins can cause a decrease of perception, sensation, and memory, and promote certain types of cancers.

[adec]

Furthermore, when nerves are damaged a protein called chondrotin-6-sulfate proteoglycans binds to another protein called semaphorin 5A. This breaks down chondrotin and creates scars, which then greatly impairs nerve regrowth. So perhaps by blocking or inhibiting this particular process might allow nerves to regenerate, or by dissolving these sugars surrounding the scar tissue.

In the meantime, it's feasible that supplementing with chondrotin sulphate itself might help somewhat. This is just conjecture on my part, but well worth the try.

[bucho]

I was on Zocor about 3 years and developed carpal tunnel in both hands during that time. Also lost sensation in my heels and big toes during that time. I've been off Zocor for about 18 months now and these forms of nerve damage have not improved (most other factors have improved). Nearly every night my fingers go numb and wake me up multiple times. The numbness in the feet I can live with, although occassionally it morphs into incredibly intense pinprick sensations in the feet that I cannot tune out by any means. Fortunately the latter is a rare occurrence.

I also developed a lyme-like bullseye rash on my hand around the time I stopped Zocor. My lyme test came out negative and the rash took about 3 months to go away. I suspected a false negative at the time but now believe the statin was the culprit, not lyme.

I also developed a lupus-like rash on my face, and at the same time ringing ears, both that started about 6 months before stopping the Zocor. The lupus ("raccoon") rash caused me a lot of concern because many of my statin symptoms raised the possibility (in my mind) of lupus. After stopping Zocor the lupus rash faded very slowly, took about a year to go away. The tinnitus is only now beginning to be a less constant companion (at 18 months off).

[bunnylady]

I had tarsal tunnel of my feet years ago - I received cortisone injections by a podiatrist which really turned off that horrible pin prick sensation- mine was so bad I thought I had been stung by many bees- since that time I had a little residule numbness in the toes of the right foot- when I took Lipitor my other foot went numb and I lost feeling in my left two toes and also my left two fingers- they don't bother me much now- at least I can type-

for tinnitus try Arches Tinnitus Formula-it really turned off the music I was hearing when I laid my head down at night- I found the link for it on this website

[vipergg22]

wish i could give you more hope but this is one of the beautiful side effects of these so called wonder drugs. I started on them back in 98 and within a month i started getting numbness and tingling in both feet , of course dr. said it could not be the drugs so i kept taking them for like 2-3 years and it got worse and worse and i went to neurologiost and had mri's done and no one could give me an answer and i finally started researching this on my own and found i wasn't alone .
This has never resolved itself and I still deal with this 24 hours a day , 7 days a week . I can see where I am gradually losing strength in my feet now and i am only 50 . I will never take another cholesterol drug and i don't care how high it is . The reduction in the quality of life is not near worth it . I really hope you get better but prepare yourself for long haul or it may never resolve itself.