Neuropath [ will never go away]

[Darrell]

This is excellent news! It also led me to a search that yielded this:
[http://care.diabetesjournals.org/cgi/content/abstract/28/1/89]

Excerpts:

"RESULTS—Data showed significant improvements in sural nerve fiber numbers and regenerating nerve fiber clusters. Nerve conduction velocities and amplitudes did not improve, whereas vibration perception improved in both studies. Pain as the most bothersome symptom showed significant improvement in one study and in the combined cohort taking 1,000 mg ALC."

"CONCLUSIONS—These studies demonstrate that ALC treatment is efficacious in alleviating symptoms, particularly pain, and improves nerve fiber regeneration and vibration perception in patients with established diabetic neuropathy."

Note the links available on the right to get the full text of the paper.

[Biologist]

Ooops!

I missed rechecking this thread until just now since I posted in it several days ago. Sorry to be so slow to respond, Darrell. Looks like Brooks did a good job of it though. Thanks, Brooks.

Others have made some interesting contributions too, perhaps most notably, by Darrell himself in his last post. Nice work. I stopped halfway through the short review to pop another 500 mg.s of ALC

I look forward to reading the full study a little later after my walk -- not my usual "run." I've had a bit of a setback due, I think, to a cold I am just getting over. Kind of interesting. I will post on that later on.

Here is a word I had to look up found in the review:

Sural--
<anatomy> Of or pertaining to the calf of the leg; as, the sural arteries.
Origin: L. Sura the calf of the leg: cf. F. Sural.

[http://cancerweb.ncl.ac.uk/omd/]

By coincidence, I posted on this subject recently in the "Peripheral Neurapathy Treatments Helps...." thread (I think) in the main Statin subforum, and recited the same study Brooks hyperlinked. Like they say, "Semi-great minds think alike...

Biologist

[cjbrooksjc]

Darrell and Boilogist: Yep. We may not be better, but we're sure as heck a lot better infortmed.

Brooks

[harley2ride]

[quote="SusieO"]Thanks Harley! So you have traveled to CA, Utah as well as Idaho to see doctors to diagnose you?????!!!!!

I have had an EMG, other tests I can't even remember what they were (thanks to Lipitor taking my memory) and many blood tests, but no one will do a biopsy (they keep saying there is no need since my CPK level is always in the normal range).

My PCP keeps saying I need to go to Atlanta, but you know what...I am so tired of being told "there is nothing wrong, a statin would not do this or just adjust to your new lifestyle and take a pain pill". Plus, I hate for my hubby to have to use his vacation to drive me to so many dr visits.

If I knew of a doctor that would be acceptable to listen to me and do the biopsy and feel YES my problem most likely comes from the Lipitor I would go - but I know of no such doctor.[/quote]

Yes I went to both places (Salt Lake twice). I'm not sure getting the biopsy and emg again is the answer. I feel that if you could at least find a doctor to listen to you and believe that you do have statin injury, that you could try medications and supplements, until you find some relief. If you look at some of my other posts, I list all the meds I am taking. For the past 4 months I have been so much better. I almost forgot that I had the injury. The only bad thing, is that I feel so good, that I overdo it, and suffer for a short period. But if I behave, I feel better than I did after only 4 days on the statins. Not back to normal, but way way better than I was for the past few years.

I went through 5 doctors before I ended up with a doctor for arthritis, and he actually did some research, talked to other doctors, and then referred me to Doctor Phillips, and then to Salt Lake. But all they really did was confirm what I had, and what caused it. I had already figured out (for the most part), what to take to help my condition. It wasn't until I got to the doc at the Elks Rehab/MDA, and he put me on Welbutrin, NADH, and Lyrica, and the combination of the three was what really made a difference in how well I feel, and how much I can do now. I would say that I went from being at about 40%, to being about 70%. It was a pretty big change. I shake less now, I can't remember when I last had muscle spasms, and my pain is minimal compared to what it used to be. My recovery time is even better. Before when I exerted myselft too much, I would hurt for weeks. Now it's just a few days.

[poohhel]

:shock: This site has been a huge awakening to what might be going on with me. Now I have something to share with my doctor as to why maybe all of a sudden experiencing what is thought to be Neuropathy. I was put on Vytorin about 16 months ago and did not know about these side effects.

Up until beginning Vytorin I was working out on a daily basis. My workouts consisted of 20-30 mins on my treadmill or gazelle. Then all of a sudden a burning pain began in my calfs and ankles. I thought I had shin splints so started treatment to help elevate the pain but it did not get better. I stopped working out because the pain go to be too bad to handle.

Slowly, other things became harder to do and I began feeling so tired after short attempts at any kind of activity or exercise. I kept thinking it was my age and just being out of shape. Recently I started ballroom dancing with my husband and fought through the pain in my calfs, shins and ankles until I started noticing extensive swelling in my feet, toes, ankles, knees, hands, and fingers. I thought Wow something is wrong.

My first thought was circulation problems and I did research to find the burning in my legs could be caused from claudication...BUT the very next day I found myself in the ER because of a numbness, tingling, and shocks of pain throughout my whole body. They could not figure out what is wrong but now I am seeing a Neurologist and am in for a lot of test. My arms and legs are getting weaker every day. I am emotional and scared every moment of every day. I can barely walk or move without pain. I wake up with back pain and go through the day with major headaches. It just seems to be getting worse. :(

So far I have been through an MRI, Cat scan, EKG, and multiple blood and urine test. Next week I go for an EMG and a NCV and an ABI test to check nerve endings, muscles, and blood flow . . .

BUT after reading this site -- I wonder if it could be the Vytorin -- I am not taking anymore chances, I am stopping the Vytorin today... and tomorrow I am sharing this information with my doctor. :o

[mgguy]

Poohell, I too have been suffering from burning, stinging, painful feet and sometimes hands. I was on Lovastatin for over 3 years when I started noticing this, about 8 months ago. Thought it was just pain from tight shoes, so bought larger ones and the pain only got worse. Now it is there almost all the time even when I have my shoes off and feet elevated. I stopped taking the statin 10 weeks ago, and am feeling a little discouraged that I haven't had any improvement. But the program manager of the UC San Diego Statin Study Group said that with neuropathy the first sign of improvement happens around 10 weeks to 4 months. The distribution of cases is an inverted bell-shaped curve, with a high percentage of people getting some improvement fairly early, a similar high percentage noticing improvement at about 8-12 months out, and very few in between. Don't get discouraged or think that statin can't be at fault just because you don't get immediate relief from stopping the drug. I have had blood tests to rule out HIV (no way), siphilis (no way), diabetes, B-12 deficiency, and several other things, and all were negative. Podiatrist says it might be from the statins and said if I don't see improvement in 3-6 months, they will do nerve tests. Primary doctor also thinks it could be statins and may take awhile to resolve itself. From reading this forum, I get reassurance that statin is the cause rather than something that could be far more serious and progressive. I must admit that I am getting somewhat discouraged since there is not improvement yet, but then I just tell myself to be patient and all will work out well. I hope that you can also keep some perspective on this and give yourself plenty of time to heal. I wish you the best and am confident from what you have said in your posts that your condition is almost certainly due to statins and you will heal with time. Would you please post your progress in this forum, as it will be helpful to others who have been impaired by statins.

[poohhel]

mgguy ~ Thanks for your response. Rest assured I will check back to this site to see what others have to offer and keep up-to-date on my progress.

I am anxious to get to my (new) doctor tomorrow and see what he says about this whole statin thing... and I am oh too anxious to start feeling some relief. Thanks for sharing the information you have as to what to expect, I only wish for myself, you and everyone else out there suffering that recovery could be as quick as the illness hit.

[poohhel]

Well today was my electromyography (EMG) and Nerve Conduction Velocity (NCV) test . . . and get this... the doctor believes my neuropathy is from a pinched nerve in my back but still can not give me reasons for such pain and weakness in my arms, legs, and feet.

I am off of the neurontin (gabapentin) because of allergic reaction, so I will find out next week what we are going to try next. I am already so tired and from the sounds of it, i.e. other posts, I have a LONG road ahead of me since I just quit statins 3 weeks ago...Yikes

[mgguy]

How was the pinched nerve detected? Is this just speculation on his part? Well, at least he seems to be working with you and is open as to what to do next. If it is due to statins, probably all you really can do is be patient and wait it out. It can take a long time, so don't get discouraged if several weeks pass without any change. One way or another you will almost certainly get better with time, so focus on the day when you will be free of pain-aaahhhhh. Thanks for the post, and keep the faith.

[poohhel]

[quote="mgguy"]How was the pinched nerve detected? Is this just speculation on his part? [/quote]


The EMG and NCV test shows the path of electricity through the nerves and muscles...according to the readout...there was a longer delay in reaction time; specifically when they shocked the nerve and stuck the needle in the muscle on my right arm and my right thigh and calf. He said the imaging will give them a better idea of where the "pinch" is occurring but he believes in my neck or spine right at my shoulder blades.

[bucho]

I had a wide range of symptoms that could be attributed to spinal cord compromise in the neck, and in fact that was my first suspicion as I frantically searched the internet for clues to explain the bizarre things that were happening to me. I now know that the villian was Zocor (I was on 20 mg Zocor for 3.5 years, and the problems began to surface after 3 years).

Now at my 1-year anniversary of quitting, I'm about 80-percent back to normal. I feel about 10 years younger than a year ago. But even in the last few weeks I've noticed a number of long-term problems falling away, ranging from muscle problems to neurological problems (such as shaking and a sensation of constant "pulsing" while going to sleep).

So there can be a road back from statin-hell, but it is a long road with bumps along the way.

[poohhel]

Thank you Bucho for sharing that...because I have been at a loss as to how a pinched nerve would take so long to show these implications. Luckily, even though my doctor appears to believe there is some other reason for my problems, at least he is not insisting that I stay on Vytorin. He did agree that if I wanted to stop I could (like I needed his permission, haha) and we would work together to find other ways to control the risk factors; i.e. cholestrol.

Bucho...you said you are feeling better and younger, so I need to ask-- Did you take the supplements suggested on this board (L-carnitine and Coenzyme Q10) to help in achieving your current state? I am just curious, because I have to admit... after this whole ordeal, I am quite hesitant to put anymore pills/supplements/meds into my body.

[bucho]

I have been taking the following supplements daily:
a) 300 mg Co-Q10 (100 mg at each meal);
b) Thera-Tears omega-3 flaxseed/fish oil blend (one capsule at each meal);
c) One balanced B-complex per day ("B-50", i.e., 50 mg of most B vitamins);
d) One GNC L-Carnitine (500 mg) per day;
e) One L-Lysine (500 mg) per day;
f) One GNC Potassium & Magnesium Aspartate 250 per day.

For my particular chemistry, I think the Co-Q10 has been the most helpful of all these supplements. But I can't know this for certain -- I'm reluctant to discontinue any of the above supplements for fear I'll undermine the recovery!

Like you, I had an exercise routine when the problems erupted. One of the worst aspects of the statin damage was that it caused exertional intolerance, to the point that a workout would cause extreme fatigue the next day (and nocturia that night -- see related topic). Even a month ago that was still a problem, but in the last 3 weeks or so I've been able to work out hard with no repercussions! Wow -- it took a full year to get to this point. But I've had relapses in the past, so I'm not ready to say I'm in the clear. Just hoping so!

[Biologist]

Hi, bucho.

Thanks for your recent update which I had requested of you in another thread a while back -- very interesting.

Your listing of your supplements just now was helpful. I will eventually get around to posting mine too. I am glad your progress is coming along well. I will do an update before long but the summary version is that I am improving in almost all areas. I had the sensation of easily being 10 or more years younger just now during a hike compared to the day I quit Zocor on November 7, 2006. I felt sure-footed and solid for the first time in nearly six months. Nice. I even felt a bit formidable -- that was shock. (I have a new appreciation now of how the old and infirm must feel, and will always be more sensitive to that in the future.) However, I would not have been the right guy to mug tonight, they all missed their last opportunity for that forever, I hope. Don't want to get out of hand here, but this has been one of the best days I have had. Considerable stamina. May be gone tomorrow, but here today/tonight.

Deadlines at work and tax time have been taking much of my time recently, but I have gotten in some reading these forums and also a bit of online research here and there.

poohhel, I have been following your posts recently and may have a few insights here and there for you and others on why it takes so long to get better and why it gets worse before it gets better. I do not know when I will get around to posting on that, but there is a rationale for it it seems to me based on both my reading and my experience. More before too long, I hope.

Biologist

[mgguy]

Biologist, any insight you can provide on PN and other statin-induced symptoms getting worse before getting better after drug cessation would be very helpful to me and I'm sure many others. My situation is that I still have burning/stinging in both feet 13 weeks after stopping Lovastatin. It varies thoughout the day, being worse in the evening for some reason. I have also noticed some tingling and occasional shooting pain in my hands that I can't remember having been happening before I stopped the drug. Is it possible that I could only now be having problems with my hands? If so, how could the PN have spread when the drug had already been discontinued?

[Biologist]

mgguy,

When you have time, I would suggest you read my old posts (use "Biologist" under the search feature). Sorry, there are a bunch of them, and like for any poster's posts, there will be a lot to go through to find the few meaningful tidbits for any given concern or question. But it is what I would do, if I were you, if I had the time. I try to be "accurate" (as if that were possible in this hidden world of statins) and have been know to "correct myself" as I become aware of better information over time -- which you will find in the chronology of my posts.

Also, first, read this with particular attention to NF-kB:

http://www.spacedoc.net/five_faces_statins.htm

I am unable to adequately explain what I suspect is happening -- nor can most researchers as far as I can tell. But here is "my theory" in an overly simplified form:

Nerve cells have above average energy requirements. Without adequate energy they become weakened. They are not targeted to be weeded out and destroyed by the immune system even in their defective state (nor do their internal built-in cellular "programs" for self-destruction become activated) because the NF-kB system is held at bay by statins. Of course, it is largely the statins that have made them so weak in the first place by denying them adequate CoQ10 production needed to maintain their functional and structural integrity. When statins are stopped, the body's natural systems for removing inadequately functioning cells is free to do its job. Countermeasures (certain supplements) for controlling "inflammation" (a long topic here that I will omit) by other means are very likely helpful in saving marginal cells, but many have long since been marked for eventual removal. Some die anyway while on statins, and that is why we start experiencing neuropathies while on the therapy. But the dam breaks when the statins are stopped -- and let their be no doubt (at least in my mind), the statins must be stopped. Marginally weakened nerve cells die. As we retain normal homeostasis (the body's natural balance of protection and equilibrium) and as cellular energy levels (through better ATP production via healthy levels of new CoQ10 production) increase, our nerve cells again may thrive.

Certain supplements have been shown to assist (as you will see in some of the studies cited in my posts that others and I have found on the Internet) nerve cells to repair themselves and, apparently, to regenerate to varying degrees.

Acetyl-L-Carnitine together with Alpha Lipoic Acid have repeatedly been recommended. I take both regularly.

Biologist

[poohhel]

Bucho: :D Thank you for posting the supplements and confirming again the importance of these to my recovery. I did go out and purchase the supplements a few weeks ago when I first found this forum and I did take two days worth before having an allergic reaction -- not necessarily to the supplements -- but I myself nor the pharmicist could determine what was causing the reaction so I stopped everything. I will start up again as soon as I am free of this rash and itching.

Biologist: Whatever information you can give provide would be greatly appreciated. I too have been reading through your post and I value your opinion, research, and suggestions. I am thankful (and lucky) that those that have been suffering through this statin damage is on this forum and willing to share their experiences... I could not even imagine having to figure this all out on my own :o Thank you so much. :D

[poohhel]

[quote="mgguy"]My situation is that I still have burning/stinging in both feet 13 weeks after stopping Lovastatin. It varies thoughout the day, being worse in the evening for some reason. I have also noticed some tingling and occasional shooting pain in my hands [/quote]

:? mgguy: I have only been off statins since March 26th, but my PN seems to be getting alot worse as well as new pains and problems. The biggest issue is similar to what Bucho had said...that 1 day of any type of exertion and the next day I am a zombie. It seems like one step forward results in 2 steps back everytime I begin to feel like I may be getting better.

Most recently the development of a rash and this awful itching, which I thought was a result of an allergic reaction. I am beginning to wonder if perhaps the itching is another symptom of the neuropathy?! :x

[Biologist]

Here's a mistake I just found rereading my last post. I wrote:

"...statins must be stopped. Marginally
weakened nerve cells die. As we retain
normal homeostasis..."
--Biologist

Scratch the word "Marginally" and substitute the word "Seriously".

But keep in mind that much of the neuropathy described in our posts (e.g., your posts) has to do with surface tingling and pain (near the skin) where the issue may have more to do with damaged nerve cell endings rather than the death of the whole cell. In such cases, there is more likely an opportunity for repair with the cell surviving, it would seem to me. Actual cell death would mean numbness -- while this is not to say that some numbness does not reverse itself sometimes, perhaps by regeneration of destroyed cell endings.

It is my guess that "the sooner the better" is in order for treatment (supplementation) for better results. The tingling in my feet has been gone for some time. I believe it healed. These are Sensory Nerves. Sensory nerves communicate pain/tingling -- as opposed to Motor Nerves which induce muscles to contract.

My concern is the slight to moderate unsteadiness of my forearms under motion which more likely implies central nervous system cell death. These are Motor Nerves -- not pain nerves. This seems to have started some months after I quit statins. However, don't be alarmed. It appears to me that I am in the minority of cases here with this particular symptom.

Incidentally, I have read that muscle loss is sometimes a matter of Motor Nerve Cell death or dysfunction. The muscle cells atrophy and disappear where there is no stimulation to contract.

Itching (a function of Sensory Nerves) is sometimes a sign of nerve cell regeneration -- this is common in recovering from liposuction operations.

Prediction: Now or in the future there will be a neurologist reading these words. I have a request of you: Please comment on what you know, suspect, or have learned through experience. Anonymously is fine.

Thank you.

Biologist

[poohhel]

My neurologist agrees that the itching is another reaction to a sensory nerve being affected (just to what extent is unknown at this time) According to my neurologist all the symptoms I am having; i.e., tingling, burning, itchiness, crawling sensations, dizziness, pain and numbness are all reactions involved in peripheral neuropathy and he still believes this brought on by 1 or more pinched nerve(s).