Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

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.

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

Todd, so sorry to hear about your wife’s troubles. You are doing the right thing exploring all options and like John Burns says – don’t give up hope. There also is a Facebook group – “Our Neuropathy Friends” that is quite active and has over 3000 group members. You might want to join the group and post questions there too. I’ve been struggling with my peripheral neuropathy for over 10 years but have just recently started searching for cause and possible treatments being one that hates going to the doctor. If you are an avid reader or like to read, I would recommend the book “Wahl’s Protocol” by Dr. Terry Wahl. She has an amazing story on her research into autoimmune diseases and how diet plays a part. I’m halfway through the book and am attempting to try the first part of the diet but I’m 73 and so set it my ways it’s a daily struggle. Good luck in your journey and please never give up. Know that there are others out there praying for you.

REPLY
@salena54

@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

Jump to this post

Salena, you can also get it as a softcopy if you have an iPad or tablet. I was able to order it through iTunes and view it in iBooks on both my iPad and iPhone. That way if I’m waiting somewhere (story of my life) I can read it using my phone. I’ve only started the basic diet this past week and have lost about 5 lbs (a side benefit). Hoping if I can stay on the diet I will see some reduction or improvement in my neuropathy but I know it’s not an overnight thing. Good luck. John

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

JohnWBurns: I’m so sorry to hear about you and your wife’s trials. I
know it can be discouraging when you haven’t received the care your wife
deserves. The insurance company I’m with isn’t anything to brag about!
“But” I can truly say that my Dr. does everything he can for me, and when I
have one of my ugly flair ups, he has compassion and understanding of my
pain in my flair up difficulty in walking. I have suffered migraines since
I was 10, due to an accident. At 22 had a histerectomy, due to a tumor, at
23 had my gallbladder removed, one doctor told my husband I was trying to
get attention. Needless to say by the time I finally got the help I needed
they had to do emergency surgery. (They said I was to skinny to have
gallbladder disease) LOL!!! I always have had problems due to my accident I
had at 10years old. Have arthritis in my neck in 3 vertebras. Before I
changed my Major in education, I was a Veterinary Technician and surgery
assistant, my husband and I trained cutting horses, and farm work, all
these things took its toll on my body, a woman wasn’t made for some types
of work. Was always active, but paid for it afterwards. Know I can’t be
active. It was difficult for me. I went back to school studied in Christian
Counseling, loved everything about it. It helped me mentally and
emotionally, physically and gave me back purpose, which we all need to
feel. I hate being a burden to my husband on those bad days, but he always
have something to lighten my load. Your wife is on Lyrics, I hope it works
for her. I couldn’t take it, and I know others it effects their emotions,
and mobility. Will be praying for you and your wife. salena54

salena

REPLY

@johnbishop :Thanks again. I know can read it as I wait for my book. As you progress on the diet let me know how it effects you health.

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

Thehubbytodd, I feel for you & wife. I had to go through much of the same issues. I’d soaked my feet in warm water in a foot massager and my wife would rub a sports cream on my feet every night before bed. I took tramadol to sleep which made me loopy though. I’d elevate my feet and hopefully fall asleep before everything wore off. 
I couldn’t walk for 2 years, forced to retire, moved into assisted living and in an power chair to get around. We even bought a van with an automatic ramp so I could get out once and awhile. I’ve tried Embrel, methotrexate, Lyrica, prednisone, oxycodin, and have settled in with gabapentin, fentanyl patches, mycophenalate (cellcept), and cymbalta. I’ve since developed ulcers and GERD from all the meds and worry but my neuropathy pain is tolerable between doses. I’m out of assisted living and walking again. Nearly 45 doctors, dozens of ER visits, and countless thousands of dollars til Mayo figured it out. It was hell on my wife and we had NO life. But we got through the worst of it for now. We’ve been waiting for the other shoe to drop, but it hasn’t (yet). 
I hope I was able to give you some insight as to what we went through. I know it may not give you much solace for your situation, however there could be some light at the end of the tunnel for you. God bless

REPLY
@bobsconnect

I have autonomic/peripheral neuropathy caused by GPA/Wegeners (vasculitis) for 6 yrs. I take gabapentin for the pain and cymbalta for the anxiety that goes along with it. I’m seeing a rheumotologist at Mayo Clinic in Scottsdale, AZ for these and he has also prescribed 50mcg fentanyl patches which has helped immensely. The combination does have side effects, mainly dizziness, which I deal with because of the pain relief benefit. The numdness does go along with neuropathy. That is the next most difficult obstacle. Trying to do anything, especially small is very frustrating. Buttons, zippers, coins, etc. are a nightmare at times. However, I have other health issues to deal with as well. More meds and doctors. It appears as though I will be dealing with this for the rest of my life. I turned 65 last Oct 2015.

Jump to this post

I had burning, tingling numbness in my feet and buttocks back in 2008. I was diagnosed with lumbar spinal stenosis and tried many meds and physical therapy. Nothing helped so I had a L4/L5 laminectomy in 2010. The burning, tingling numbness continued and again I tried Gabapentin and a prescription topical cream. When that didn’t helpI went to Johns Hopkins Neurological Department in 2012 and after extensive testing they told me that I would have to live with the pain. In 2015 I saw a different neurosurgeon and he recommended another L4/L5 surgery. After that surgery, I had some relief and now have burning pain and numbness only in my left foot and lower leg. I take 900mg of Gabapentin daily. It helps some and I take Tramadol when the pain is strong. I actually have pain flare ups that last for several days when I am on my feet too long. My pain is increased when I stand or walk but I still have the ability to walk.

Does anyone relate to this? Any other things to try?

REPLY
Please sign in or register to post a reply.