Hi! I recently got some good information that I would like to share. My cousin in Michigan husband (he died a couple years ago :( )had nf1 and her daughter and gradaughter also have it. She gave me a name of a lady to contact for informaiton. Her name is Rosemary Anderson mother of Julian Anderson (of the x-files) her son has nf and she is a great resource. I talked to her yesterday and she told me about a supplement called: Neuropathy Rx and the testmonal of a man that has nf1 says it reduced the size of his bumps and took most of the pain and tingeling away! The web page that shows his video is: www.neuropathysolutions.com Try to copy that and paste in your address bar. It is in a study right now. The nurse that is helping in this study is Patty Hall her number is: 616-826-4033. Give her Rosemary Anderson's name if you decide to call her for more information. Rosemary said if I decided to try this supplement put in a code of "NF" and we will receive a discount. I think I will try this it can't hurt. I hope this is helpful. Good luck everyone!
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
nutrtional supplement
- By sweetiecat
- Posted July 1, 2009 at 1:56 pm · 15 replies
- In Living with NF1
- Shared with the public
Explore topics in this discussion:
15 replies
- Oldest first
- Newest first
- By GirlA
- Posted July 1, 2009 at 7:11 pm
- Report post
Thank you very much for telling us about this
product. I ordered some on-line. Going to give it a try=can't wait till it comes in the mail=hoping and
praying that it helps even a little bit. Thanks again.
- By sweetiecat
- Posted July 1, 2009 at 9:00 pm
- Report post
GirlA,
Good luck! I'm going t order mine when I get my check this week. Let me know how it works for you. My main goal is for less pain. And of course the bumps and lumps to stop growing and coming up.
- By KittyLover
- Posted July 1, 2009 at 9:54 pm
- Report post
CindyLouWho is a big advocate on nutritional supplements and just alternative treatments in general.
hopefully she'll see this and be able to respond to you.
- By sweetiecat
- Posted July 1, 2009 at 11:12 pm
- Report post
Thank you, I will be anxious to see if it is helpful to anyone of us. There is always hope.
- By sweetiecat
- Posted July 3, 2009 at 12:51 am
- Report post
I hared this information with a counselor this Thursday evening and she thinks the supplements would be worth trying. I wasn't totally sure I would do it because of my other medication but the site for neuropathy Rx says that it won't interact with any medications that we are taking. Does anyone know any different?
- By chefdavid
- Posted July 3, 2009 at 5:24 am
- Report post
I have been on the Neuropathy Rx since November and it has reduced some of my major muscle pain and has reduced the size and color of some of my tumors, this has some side effects like stomach problems and you must take with food, this is a supplement that you take 2 pills twice a day read the information, do your research. Has it helped? For me I say it has helped some, will it help you? I don’t know. Go to the web site www.neuropathysolutions.com and read, watch the video and you make the choice.
- By ukdude
- Posted July 3, 2009 at 4:56 pm
- Report post
umm looks good, is this the only retailer of it thou? done a web search and came to nothing.
- By sweetiecat
- Posted July 3, 2009 at 5:10 pm
- Report post
Sorry, I don't know the answer to that . This is the first I've heard about it. However you may want to try and call Patty Hall RN at 616-826-4033 she is helping to lead this trial. She may have more answers for you than I. Good luck and let me know if you try it.
- By chefdavid
- Posted July 4, 2009 at 7:47 am
- Report post
Yes that is it UKdude, mail order only..
- By chefdavid
- Posted July 4, 2009 at 7:47 am
- Report post
Yes that is it UKdude, mail order only..
- By catmom08
- Posted July 7, 2009 at 12:34 pm
- Report post
Interesting information. I will look forward to hearing how it helps different people. i like to see if the nurse has a website or email so i could find out what kinds of people she used in the study / ie smokers/ non smokers etc. i know lifestyle can make a diference too. that is in how it helps or doesnt help people and other genetics.
- By sweetiecat
- Posted July 7, 2009 at 3:03 pm
- Report post
I just ordered mine today and i feel if helps with the pain any it will be worth it.
- By sweetiecat
- Posted July 7, 2009 at 3:04 pm
- Report post
Good luck and let me know how it works! I ordered mine today. Let's hope!
Add to the discussion