Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

Is anyone here on mycophenolate for severe neuropathy or anything else? The neurologists recommended that I try it yesterday and I will, but I’m concerned about possible serious side effects, like lymphoma.

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My daughter in law sells oils from young living. She makes a rub with
coconut oil and uses olive oil so the oils I roll on for pain. I’ve been
using the oils for about five months now. They work OK, when I have a bad
day I have to take something stronger. I use the oils for all kinds of
things. I even use them in a diffuser I purchased from the same company.

salena

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@salena54

My daughter in law sells oils from young living. She makes a rub with
coconut oil and uses olive oil so the oils I roll on for pain. I’ve been
using the oils for about five months now. They work OK, when I have a bad
day I have to take something stronger. I use the oils for all kinds of
things. I even use them in a diffuser I purchased from the same company.

salena

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Thanks. I’m going to look up their website.

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If you live in the Minneapolis area, the Minnesota Neuropathy Association is having a meeting on Thursday, April 28th at 7pm – a guest speaker, Denise Nelson, RN is giving a talk – “Solving the Health Care Puzzle and the Role of the RN Patient Advocate”. More information can be found on the website – http://www.neuropathy-mn.org/

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@bobsconnect – I don’t have any side effects from the 100mcg/hr. It is the only thing that has ever helped. I took gabapentin for three months, several years ago, and have no memory of that time. I made so many mistakes at work. My neuropathy is caused by nerve damage from spine tumors and the six lower back surgeries I’ve had. I’ve been on the 100mcg for years and it still works. Why won’t your doctor up your dosage instead of having you switch it out every two days in the summer?

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@johnwburns

Is anyone here on mycophenolate for severe neuropathy or anything else? The neurologists recommended that I try it yesterday and I will, but I’m concerned about possible serious side effects, like lymphoma.

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Go to: http://www.realfoodnutrients.com and click on the Nerve Formula. This is a
supplement with NO side effects. I have had neuropathy for about 10 years
and this is what I have taken. No more pain, burning, stabbing, etc. I am
sooo thankful for this supplement. Best of all, no side effects as you have
with prescription drugs!

The things we take for granted, others are praying for!

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@johnwburns

Is anyone here on mycophenolate for severe neuropathy or anything else? The neurologists recommended that I try it yesterday and I will, but I’m concerned about possible serious side effects, like lymphoma.

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Thanks. I have no doubt that it may help. I’ve looked into b vitamins for neuropathy before, especially B6 and methylcobalamin. The only problem with using high doses of B12, and thiamine more so, is that they may stimulate cancer growth. The jury is still out but I’m trying to minimize my risk. I’m looking at a second recurrence of prostate cancer so the neuropathy is just one of several issues, albeit a big one. High doses of thiamine may hinder cancer growth but until they are sure, and it seems like they never are, I’ll be cautious.

High-dose vitamin B1 reduces proliferation in cancer cell lines analogous to dichloroacetate. – PubMed – NCBI

High-dose vitamin B1 reduces proliferation in cancer cell lines analogous t…
By Hanberry BS , et al. Cancer Chemother Pharmacol. 2014 Mar;73(3):585-94. doi: 10.1007/s00280-014-2386-z. Epub 2014 Jan 23. Research S… | |

The formula that you suggested does look particularly good and I’ll file it in case I decide to drop the drugs and go the natural route. Thanks very much for the suggestion.

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@johnwburns

Is anyone here on mycophenolate for severe neuropathy or anything else? The neurologists recommended that I try it yesterday and I will, but I’m concerned about possible serious side effects, like lymphoma.

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I had hip replacement surgery in November 2015 now I have pain in the leg that it makes it impossible to move my left leg it is like the foot is super glued to the floor surgeon says everything is fine work says u have 37 more days to figure it out or you can’t work this means I lose my job and insurance any suggestions

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I apologize if this is a duplicate of anything previously discussed. I have been getting diagnostic stuff done & prep for beginning chemo for a second cancer with mets, so been a bit busy. I finally got a beginning treatment plan, unfortunately after learning that things are not looking as good as we had hoped. One of the chemo drugs has a side effect of PN, which I have now from a previous cancer drug. Obviously, I am pretty concerned about that because, if I cannot tolerate these drugs, my options will be even more limited. In a group that I am in, I was told about a previous study where IV magnesium and Calcium given during chemo really helps reduce the incidence of PN. I am still doing some research on this, so do not know if this combination is relevant in existing PN or when taken orally. Bottom line, it might be worth looking in to. If anyone has had any experience with it, please share. I want the best shot at managing the 3 chemo drugs I will be on. My husband goes to a doctor who also specializes in supplements – has his own brand that he makes in house. I plan to make an appointment if this is something that he is familiar with. My husband will see him on Monday and ask; if I hear anything significant (positive or negative) I will certainly share.

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Did you do physical therapy? So sorry for your pain and hope you can find a
resolution soon.

The things we take for granted, others are praying for!

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@dorsey

Did you do physical therapy? So sorry for your pain and hope you can find a
resolution soon.

The things we take for granted, others are praying for!

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@martid

I apologize if this is a duplicate of anything previously discussed. I have been getting diagnostic stuff done & prep for beginning chemo for a second cancer with mets, so been a bit busy. I finally got a beginning treatment plan, unfortunately after learning that things are not looking as good as we had hoped. One of the chemo drugs has a side effect of PN, which I have now from a previous cancer drug. Obviously, I am pretty concerned about that because, if I cannot tolerate these drugs, my options will be even more limited. In a group that I am in, I was told about a previous study where IV magnesium and Calcium given during chemo really helps reduce the incidence of PN. I am still doing some research on this, so do not know if this combination is relevant in existing PN or when taken orally. Bottom line, it might be worth looking in to. If anyone has had any experience with it, please share. I want the best shot at managing the 3 chemo drugs I will be on. My husband goes to a doctor who also specializes in supplements – has his own brand that he makes in house. I plan to make an appointment if this is something that he is familiar with. My husband will see him on Monday and ask; if I hear anything significant (positive or negative) I will certainly share.

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Martin thank you for an excellent overview of chemo and pn I think that the suggestions will help many of us and I intend to do some research on your info. Please keep us updated on any info you may find and I’ll do the same. And I hope that all goes well for you. I’m sure you will be in all of our prayers.

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