Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@mikween

ANYONE THAT HAS NEUROPATHY PLEASE GO TO THIS LINK http://WWW.SILVESTERFOOTCLINIC.COM and then HOW WE CAN HELP, and then NERVE PAIN and read that page, and then scroll down and click on the link neuropathy. And you will see the different options he has available for people including the surgery that I mentioned the other day that no one had ever heard of. I am very excited. My appt. is May 16th. I will let you guys know how it goes. Wish me luck…. It all sounds really great. I hope you guys get this. I have tried typing this about 4 times and something keeps happening and throwing me out.

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Hi @mikween,
Here’s the abstract of a research paper I found about “Surgical treatment of peripheral neuropathy: outcomes from 100 consecutive decompressions.” https://www.ncbi.nlm.nih.gov/pubmed/16166462 Published in 2005.

According to the Mayo Clinic information (http://mayocl.in/2qBbcFY) “If you have neuropathies caused by pressure on nerves, such as pressure from tumors, you might need surgery to reduce the pressure.”

We will be very interested in hearing what you find out on May 16th. Hopefully this information helps to prepare questions you might ask at the appointment. Please keep us posted.

@mikween

ANYONE THAT HAS NEUROPATHY PLEASE GO TO THIS LINK http://WWW.SILVESTERFOOTCLINIC.COM and then HOW WE CAN HELP, and then NERVE PAIN and read that page, and then scroll down and click on the link neuropathy. And you will see the different options he has available for people including the surgery that I mentioned the other day that no one had ever heard of. I am very excited. My appt. is May 16th. I will let you guys know how it goes. Wish me luck…. It all sounds really great. I hope you guys get this. I have tried typing this about 4 times and something keeps happening and throwing me out.

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Also @mikween, can you please send me a message using this form to tell me about the tech issues you were having with the website: https://connect.mayoclinic.org/contact-a-community-moderator/

Additionally, we discourage the use of ALL CAPS for writing messages as it is considered shouting in online communication. Maybe you’re excited and feel like shouting 🙂 Still I recommend turning the all caps off. See the community guidelines here: https://connect.mayoclinic.org/community-guidelines/

Talk soon.

@mikween

ANYONE THAT HAS NEUROPATHY PLEASE GO TO THIS LINK http://WWW.SILVESTERFOOTCLINIC.COM and then HOW WE CAN HELP, and then NERVE PAIN and read that page, and then scroll down and click on the link neuropathy. And you will see the different options he has available for people including the surgery that I mentioned the other day that no one had ever heard of. I am very excited. My appt. is May 16th. I will let you guys know how it goes. Wish me luck…. It all sounds really great. I hope you guys get this. I have tried typing this about 4 times and something keeps happening and throwing me out.

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Hi @colleenyoung, sorry about the all caps. I just wanted to know are you the only one that revived my message about the link I sent? And if so how do I get everybody to get it?

@mikween

ANYONE THAT HAS NEUROPATHY PLEASE GO TO THIS LINK http://WWW.SILVESTERFOOTCLINIC.COM and then HOW WE CAN HELP, and then NERVE PAIN and read that page, and then scroll down and click on the link neuropathy. And you will see the different options he has available for people including the surgery that I mentioned the other day that no one had ever heard of. I am very excited. My appt. is May 16th. I will let you guys know how it goes. Wish me luck…. It all sounds really great. I hope you guys get this. I have tried typing this about 4 times and something keeps happening and throwing me out.

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Hi @mikween,
When you reply to an email that you receive from Mayo Clinic Connect’s website, your message is posted for everyone to see. Click VIEW & REPLY in this email and you will see the entire discussion thread about neuropathy. Scroll up and you’ll see your post with the link to the website about surgery options.

I hope this clarifies. I have posted this publicly because I believe other members may have the same question. Thank you for raising it.

@mikween

ANYONE THAT HAS NEUROPATHY PLEASE GO TO THIS LINK http://WWW.SILVESTERFOOTCLINIC.COM and then HOW WE CAN HELP, and then NERVE PAIN and read that page, and then scroll down and click on the link neuropathy. And you will see the different options he has available for people including the surgery that I mentioned the other day that no one had ever heard of. I am very excited. My appt. is May 16th. I will let you guys know how it goes. Wish me luck…. It all sounds really great. I hope you guys get this. I have tried typing this about 4 times and something keeps happening and throwing me out.

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Notice this review from 2013 that was referenced in this article. https://www.ncbi.nlm.nih.gov/pubmed/24124946 It references the need for more research into the seeing if diabetic neuropathy may be a compression-caused neuropathy since compression relieving surgery seems to help.

hi @colleenyoung I do not have a view and reply button on my screen. I think I saw it one time, but now I am not seeing it anymore I only see Post reply. Is something wrong with my machine or am I not looking in the right place?

hi @colleenyoung or should I just hit reply from within my e-mail itself since I do not see a view and reply button?

@mikween

ANYONE THAT HAS NEUROPATHY PLEASE GO TO THIS LINK http://WWW.SILVESTERFOOTCLINIC.COM and then HOW WE CAN HELP, and then NERVE PAIN and read that page, and then scroll down and click on the link neuropathy. And you will see the different options he has available for people including the surgery that I mentioned the other day that no one had ever heard of. I am very excited. My appt. is May 16th. I will let you guys know how it goes. Wish me luck…. It all sounds really great. I hope you guys get this. I have tried typing this about 4 times and something keeps happening and throwing me out.

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So now does everyone see this.  I just hit reply from my e-mail direclty.

@mikween

ANYONE THAT HAS NEUROPATHY PLEASE GO TO THIS LINK http://WWW.SILVESTERFOOTCLINIC.COM and then HOW WE CAN HELP, and then NERVE PAIN and read that page, and then scroll down and click on the link neuropathy. And you will see the different options he has available for people including the surgery that I mentioned the other day that no one had ever heard of. I am very excited. My appt. is May 16th. I will let you guys know how it goes. Wish me luck…. It all sounds really great. I hope you guys get this. I have tried typing this about 4 times and something keeps happening and throwing me out.

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I see it.

John

I would like to thank everyone that has sent me more information on neuropathy. It has certainly made me think twice about having the surgery. I really liked the link to the different Meds., Therapies, and Alternative medicine. I am so glad that I found this discussion group. Another Dr. Elkwood that I had been working with before a couple of years ago about my foot drop. Which I did not go because somone told me all he would be doing would be a tendon transfer. And at that point he told me he could help me. So, I found another doctor in this area and he told me my chances would be 50/50. For it to work. So I did not go, perhaps I should have. I have read good reviews about him. Has anybody ever heard of him. Anyway I got in contact with her again a ask if he did anything with people that had neuropathy and that had foot drop. She responded almost really soon and already a date set up for surgery. In the meantime I was going to get her a. Updated EMG for my Foot Drop to see if he could still help me with that. Because the latesed EMG he had was from 2013 and at that point he said he could have helped me. So, I told her I did not want to do anything until we got my EMG. I am sure that it is to late to do anything about my foot drop. But I was not ready to set up any surgey especially since I have this appt. set up with this doctor in May. I a could not beilive that she already had it set up without even talking to me. Because of course I am going to have many questions. What kind of questions might you guys ask the doctor? If you do not mind me asking you. Just because I am sure that I will forget to ask something about the surgery. Besides the main ones.

@mikween

ANYONE THAT HAS NEUROPATHY PLEASE GO TO THIS LINK http://WWW.SILVESTERFOOTCLINIC.COM and then HOW WE CAN HELP, and then NERVE PAIN and read that page, and then scroll down and click on the link neuropathy. And you will see the different options he has available for people including the surgery that I mentioned the other day that no one had ever heard of. I am very excited. My appt. is May 16th. I will let you guys know how it goes. Wish me luck…. It all sounds really great. I hope you guys get this. I have tried typing this about 4 times and something keeps happening and throwing me out.

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Yes, @mikween. Your reply can be seen by all.

@johnwburns

I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren’s syndrome.  I take gabapentin and duloxetine but pain isn’t the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you’ll have better luck with the chemo induced version.

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Hi John. Thanks for all the info. I agree that supplements do help many things. I have avoided gall bladder surgery by using milk thistle and danderlion drops every morning. I also keep my glucose level down using an array of supplements. And… Dr Wahl is my hero. She cured herself of MS. Wonderful lady! I am going to check that facebook group you mentioned. I also have neuropathy with numbness and shooting pains– like needles sticking in my feet and toes. My doctor did recommend alpha lipoic acid for this and I have taken it for many years without noticing any difference. I have recently developed lymphedema in my legs and feet. They gave me leg pumps that massage your legs from the feet to the knees. I have been using these for one hour a day and have noticed recently that my feet are less numb and I get less shooting pains. I also have to use compression stockings. I wonder if this is helping my neuropathy? Guess it would be interesting for someone to do some research.

@johnwburns

I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren’s syndrome.  I take gabapentin and duloxetine but pain isn’t the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you’ll have better luck with the chemo induced version.

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Hi @amkaloha, Dr. Wahls does have an amazing story to tell. I need to get back on track with my diet. I have done good for about the last year but have been getting a little careless lately with the junk and processed foods. I normally try to avoid processed foods and stay away from sugar but once in awhile one of those chocolate chip cookies jumps me out of nowhere and it’s hard to just eat one. I do try to stay with her green smoothie routine at least 4 to 5 days a week. My doctor recommended compression socks for me several years ago but they seemed to make my feet feel worse. My right leg will sometimes swell up a little but most of that has gone away since I started taking the supplements last September. I do make sure I always sleep with ankle socks at night since I woke up one night a few years ago for my old mans trip the bathroom and noticed blood all over the floor. After spinning around in a circle a few times to see where it was coming from I noticed a tiny column spurting out of my ankle. Paramedics made me take an ambulance ride to the emergency room even though they had stopped the bleeding. So I now also make sure I keep my toenails trimmed since the doctor said I must have rubbed my feet together and nicked a blood vessel near the surface of the skin on my ankle. Funny part was when they tried to put a blanket over my head when they were taking me outside and I could see all my neighbors lights turned on to see what the commotion was. I told them please don’t cover me up! – didn’t want the neighbors to get the wrong idea.

I think the leg pumps probably are helping. I have one of the small hand held spot massager that makes the foot feel better but it’s only been temporary. It would be interesting to try one of the leg pumps but the cheap ones probably aren’t very good and I’m not sure about getting ones that are medical grade.

Hope you find some relief.

John

@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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Wow, I’ve been having spasms in my legs and feet for almost 4 years now. I’ve gone to many different Drs. No one knows what my problem is. They tried be on different medicines but nothing helped and the side effects were terrible. Finally I asked the neurologists if he knew what was wrong with me and he said no. So I’ve been living with this pain all this time. It only comes at night after I fall asleep,, sometimes I will have them from 2-6 times a night. I have to immediately get on my feet before I get any relief. These are not charley horses, it’s something else, the only way I can sleep is get up and get into my recliner. Then when it hits I can get on my feet faster so the spasm doesn’t last as long. I’m going to try your soap. Praying it works. Thank you for the suggestion. Jody

I’ve had Idiopathic Peripheral Neuropathy in my lower extremities for about 14 years now. I am 53 years old. Been to Dr. after Dr. with no results. All kinds of therapy, pills, creams, vitamins, etc. Have found nothing to help. I’m taking Alpha Lipoic Acid 600 mg a day to keep it from getting worse. It gets very painful in the evenings and at night. I do take pain meds and they help about 50%. I’ve done everything possible to not resort to pain meds. I have noticed that a low-sugar diet helps. I ran into a friend of mine the other day that has it also. She said she has cut meat and sugar out of her diet and she has been able to cut her pain meds out. I sure wish I had all of the money I have spent on trying to get relief!

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