1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Dec 1, 2017
In reply to @gman007 "Someone may have already made this point, but just in case. My PCP advised me when..." + (show)
@gman007

Someone may have already made this point, but just in case. My PCP advised me when I was prescribed a statin again after stopping for some of the reasons you mention that I should take a supplement CoQ10. In researching this idea, I found that it is pretty common advice for those who experience pain while taking a statin. If you needed the statin for your health, I think it would be a good idea to discuss this with your physician and b=not just stop.

Jump to this post

@kevinking and @gman007 - I also will not take any statins. I have neuropathy and statins cause neuropathy or make it worse if you have PN. Lots of evidence to support the downsides of statins. I'm not a doctor but when decisions are made on medications I take, my feeling is that you need to be informed and know the risks...and discuss them with your doctor. I had the discussion with my pcp after she wanted to put me on simvastatin to help reduce my cholesterol levels. Basically told her no, that I would work on the diet and natural methods of bringing the numbers down.

Statins make PN Worse:
The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/
Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1
Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8
It's always best to have the discussion with your doctor but you really need to learn everything you can about the medications and treatments so that you can work with your doctor for the best outcome.

Hoping all my PN pals are having a pain free day.

John

REPLY
Parus | @parus | Dec 1, 2017

@gman007 Words are a shield. My sword is embedded in the stolid rock of_______.

REPLY
Gary, Alumni Mentor | @gman007 | Dec 1, 2017

Jesus Christ! I don't know if you wanted me to fill in the blank, but I did. If that makes anyone uncomfortable, I am not, and have never been, in the habit of forcing anyone to drink from a fire hose, but I also don't hide behind words or political correctness. I was, however raised to be respectful, polite, and let people ask me about my walk if they are interested. If I don't walk it, I probably will not get many queries.

REPLY
1 reply
Gary, Alumni Mentor | @gman007 | Dec 1, 2017
In reply to @gman007 "Someone may have already made this point, but just in case. My PCP advised me when..." + (show)
@gman007

Someone may have already made this point, but just in case. My PCP advised me when I was prescribed a statin again after stopping for some of the reasons you mention that I should take a supplement CoQ10. In researching this idea, I found that it is pretty common advice for those who experience pain while taking a statin. If you needed the statin for your health, I think it would be a good idea to discuss this with your physician and b=not just stop.

Jump to this post

Could not agree more with being your own advocate because no one else is applying for the job. As far as addressing cholesterol with diet, I could show you mine going back over at least eight years and you would never suspect that I had any cholesterol issues, but heredity can not always be exorcised on a treadmill or squat rack. So, we always have to make choices between the lesser of evils and our decisions won't ever be the same, but the discussion is a very good thing. Take care John. Gary

REPLY
Parus | @parus | Dec 1, 2017
In reply to @gman007 "Jesus Christ! I don't know if you wanted me to fill in the blank, but I..." + (show)
@gman007

Jesus Christ! I don't know if you wanted me to fill in the blank, but I did. If that makes anyone uncomfortable, I am not, and have never been, in the habit of forcing anyone to drink from a fire hose, but I also don't hide behind words or political correctness. I was, however raised to be respectful, polite, and let people ask me about my walk if they are interested. If I don't walk it, I probably will not get many queries.

Jump to this post

@gman007 I believe everyone has the right to make choices. My sincerest apologies and filling in the blank was optional. Nice response. I do have a unique way of being laconically incorrect at times. My word would have been faith. Looks as though we have this in common. Take care and and welcome to the community. Your directness appreciated.

REPLY
suzylulu | @suzylulu | Dec 1, 2017
In reply to @parus "@jersy Neuropathy is a dreadful thing. We who live with this menace are always in search..." + (show)
@parus

@jersy Neuropathy is a dreadful thing. We who live with this menace are always in search of relief. Not sure what has caused mine. I was commenting on a comment of some other member about vapo-rub helping- it does help me. Be sure to have your Vitamin D levels checked and also a B-complex can be helpful. Always discuss with your doctor. i am 66 and on some days feel 94. Welcome.

Jump to this post

Thank you for clearing this up for me

REPLY
Gary, Alumni Mentor | @gman007 | Dec 1, 2017

No apology necessary and I look forward to future communications. Take care.

REPLY
Parus | @parus | Dec 1, 2017
In reply to @gman007 "Someone may have already made this point, but just in case. My PCP advised me when..." + (show)
@gman007

Someone may have already made this point, but just in case. My PCP advised me when I was prescribed a statin again after stopping for some of the reasons you mention that I should take a supplement CoQ10. In researching this idea, I found that it is pretty common advice for those who experience pain while taking a statin. If you needed the statin for your health, I think it would be a good idea to discuss this with your physician and b=not just stop.

Jump to this post

We never know what DNA will do. I know what statins do and I will take my chances with my LDL being a bit on the high side as statins and I do not get along well. My diet is healthy and the HDL is above normal. Mayhap they will balance out??

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Dec 1, 2017
In reply to @gman007 "Someone may have already made this point, but just in case. My PCP advised me when..." + (show)
@gman007

Someone may have already made this point, but just in case. My PCP advised me when I was prescribed a statin again after stopping for some of the reasons you mention that I should take a supplement CoQ10. In researching this idea, I found that it is pretty common advice for those who experience pain while taking a statin. If you needed the statin for your health, I think it would be a good idea to discuss this with your physician and b=not just stop.

Jump to this post

@parus and @gman007 you are right about choices, discussions and more. I've never really been concerned too much about my cholesterol levels (maybe I should be but that's the choice thing). I have done a little reading about there being some disagreement in the medical community on cholesterol levels. Mine has always been borderline according to my Mayo doctor teams over the years, probably since my 50s. I did find a nice chart that kind of gives some "normals":
https://medlineplus.gov/magazine/issues/summer12/articles/summer12pg6-7.html
So, I'm voting with you @parus and taking my chances ☺

John

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Dec 2, 2017
In reply to @venki "I have been suffering from Ulnar Neuropathy. Im 55. I want to be clarified whether I..." + (show)
@venki

I have been suffering from Ulnar Neuropathy. Im 55. I want to be clarified whether I will be having peripheral neuropathy. What are the tests to be taken? I have already taken Nerve conduction test, Colour doppler tests etc. For the past 6 months Im not able to walk freely and my left hand is not also painful.

Jump to this post

@artscaping

Chris, I had an audio evoke test that indicated autonomic neuropathy. I also had a set of puncture biopsies that indicated sfn. Of course, I had the nerve conduction done years ago, before I knew anything more specific.

Jim

REPLY
View MoreView Less
Please sign in or register to post a reply.