Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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/

REPLY

@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?

Liked by nadamarie

REPLY
@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.

Jump to this post

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!

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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

REPLY

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.

REPLY

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!

REPLY
@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!

Jump to this post

REPLY
@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.

Jump to this post

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.

Liked by martid

REPLY

My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can’t do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)

REPLY
@thehubbytodd

My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can’t do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)

Jump to this post

Welcome to Connect @thehubbytodd
I moved your message to this discussion thread about neuropathy so you could connect with @rabbit10 @johnwburns @bobsconnect @grandma41 @johnbishop and everyone else talking here. They know first-hand what it is like to live with neuropathy and may be able to offer some thoughts and advice.

REPLY
@thehubbytodd

My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can’t do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)

Jump to this post

briansr here. I have neuropathy from toes working its way up. You may have
just opened my eyes to why both knees and one hip will keep me awake all
night. Ice, temp., helps my knees but the best drug wise is gabapentin,
800mg four a day but it’s not enough. My drug company has a limit on how
much they will allow. Twenty years ago I had a pain doc that had people on
10,000 mgs a day and no need for any narcotics, boy he was right too!!

REPLY
@thehubbytodd

My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can’t do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)

Jump to this post

Sorry to hear about your wife’s troubles. My neuropathy is serious but nothing on that scale. You say its inflammatory so has there been a primary diagnosis of something like Lupus or Sjogren’s, or another connective tissue disorder? Sounds like your wife is on the usual pain meds, the only one that I didn’t see listed was an antidepressant, usually duloxetine. I’m pretty sure that opioids can be used for neuropathic pain with the usual warnings about addiction, but addiction worries sound secondary to comforting her at this point. My 2 cents. Here’s a finding about that: http://www.ncbi.nlm.nih.gov/pubmed/23986501
Duloxetine or another antidepressant may help. Pain is not an exact science so don’t give up hope. Best of luck to you and your wife.

REPLY
@thehubbytodd

My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can’t do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)

Jump to this post

Todd, I forgot to add that cell cert can take at least 6 months to work. I just started it a week ago. If your wife hasn’t been on it long, she may hopefully still benefit. Again, good luck.

Liked by thehubbytodd

REPLY

@johnbishop :Thank you for the information on the “Wahls Protocol”. I ordered a copy, cant wait. I look up Dr. Terry Wahls, what an testamony. I belive more than people can benifit from what she has researched in the integrative approch to healing chronic autoimmune conditions. I also think if someone is suffering with a sickness is to find purpose in something, and I think these post give many a type of purpose in helping each other. I thank you so very much, my purpose will be in studing this book, puting it into action, and sharing it whith others. Thanks Salena54

REPLY
Please login or register to post a reply.