My Miraculous Recovery from Neuropathy

Posted by tuckerl96 @tuckerl96, Jun 7 11:03am

I am a Triple Negative Cancer survivor. I had my first breast removal 7 years ago, and my next was 3 years ago. I suffered Neuropathy which started after treatment of my 1st surgery, and after the 2nd surgery it really got worse.

I first took Gabapentin, then Lyrica along with Propanolol. These meds still did not eliminate the pain, dizziness, and unbalance. I was scheduled to go to a Neurosurgeon to see if there was anything else that could be done. He examined me and scheduled an MRI with contrast.

On February 12, 2024 I went in to get MRI. I advised that I may be allergic to dye because when I was getting tests for my last surgery I was getting an MRI on my breast and all of a sudden I could not breathe and had to be pulled out. At that time they could not attribute it to anything but the uncomfortable position they have you in to get the test done. Anyway, almost immediately upon getting the contrast in I was having trouble breathing so I had them get me out of machine. I actually died and had to be resuscitated. I then spent 3 days in the hospital. I read the report from the hospital and saw that I was also diagnosed with Fatal Kidney disease. I made an appointment with my regular Doctor. He immediately ran blood work, and said there was no longer any Kidney damage showing up, and I told him my dizziness and Neuropathy pain had been relieved as well. To this day, 4 months after being resuscitated I have quit my medications for Neuropathy, have no pain, and no dizziness or unbalance episodes. My blood pressure has also come down from being in the 175 t0 190s to 120. I feel that my whole body has had a reset after being resuscitated.

I shared this information with my oncologist today and he stated in all his years of practice he has never heard of anyone recovering from neuropathy. I know being resusicated is not a treatment that anyone would ask for, but I am wondering if there could be some kind of brain stimulation that could be done to help others recover from this crippling problem. This is why I decided to share my experience with this Chat room.

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

@celia16

After discussing my numbness with my neurologist, who suspects B12 deficiency as culprit, I thought it was permanent, but in the follow up appointment, he said recovery was possible with time and restoring my body with treatment. I’m doing much better. My right hand improved at my last neurologist visit! I anticipate at least 12 months of treatment to gauge the situation. The paresthesia has reduced in my feet. I never had pain. I don’t think most people understand how distressing this condition can be. My heart goes out to those who suffer with significant pain.

How do we manage our expectations? I feel hope is vital for me.

Jump to this post

I have PN for 7 years and have used so many drugs and other modalities to help the severe pain in my feet without success until 6 weeks ago when I saw a new neurologist. I was started on Nortripyline at 10 MG increasing weekly by 10 MG until 50 MG. Now my pain is minimal and only in the very ends of my toes. Now I can actually sleep through the night without pain.
Thi may not be the answer for everyone but it's worth a try.

REPLY
@26sabrina

I have PN for 7 years and have used so many drugs and other modalities to help the severe pain in my feet without success until 6 weeks ago when I saw a new neurologist. I was started on Nortripyline at 10 MG increasing weekly by 10 MG until 50 MG. Now my pain is minimal and only in the very ends of my toes. Now I can actually sleep through the night without pain.
Thi may not be the answer for everyone but it's worth a try.

Jump to this post

That’s great news! I’m glad it’s helping you. I haven’t had pain in my feet though. I have had numbness, but that’s bothersome, not painful. It has improved since starting the mega doses of Vitamin B12.

I have had intermittent stinging in my right hand. That does wake me up. It’s intermittent too. Never does it during the day, That bothers me the most. I hope it will resolve. I will take meds, if it doesn’t.

REPLY
@rorygirl

I take both Nuphoria and the protocol 525. I use on occasion valium and tramadol for flare ups and by and large the PN is not too bad. Balance is an everyday work in progress.

Jump to this post

Hi @rorygirl - you may notice I edited your post slightly. As a reminder, we ask members to refrain from political postings. https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/ " 6. Keep politics out of the community conversations." Thank you for understanding.

REPLY

I had a PT once that ran me through horrible exercises, someday I could barely get back out of bed again the next day. Anyway, during all of that she told me about her son, a minor, who had some heart conditions and she used an adjustment to his body, just under where his rib cage meets in the middle. I was there for leg pain that included all the way down one leg and a whole hip. Neuropathy was the best diagnosis they could come up with it. Which is why they dumped me on her. She suspected some scar tissue from way back in my medical history and did (as a last resort) a pinch pull that was very painful, right about same place. That's also where you would have had chest compressions. It worked on me, for 2 years. No pain at all. Then, it came back, and worse because I then had falls too. I think you are onto something, but I never could get her to do it to me again. She said she didn't remember doing it, two years later when it came back. Internal scar tissue can and does do a lot of things.

REPLY

To tuckerl96. I read your story. Very interesting. Maybe, the good Lord felt you had endured enough with the breast surgery. Consider yourself very blessed and one of the chosen few. My best to you in your future journey. Take care. Boomarang

REPLY
@boomarang

To tuckerl96. I read your story. Very interesting. Maybe, the good Lord felt you had endured enough with the breast surgery. Consider yourself very blessed and one of the chosen few. My best to you in your future journey. Take care. Boomarang

Jump to this post

Thank you for your comments. I too consider myself very blessed to be unencumbered by this disease it is very debilitating. So far the Neuropathy had not returned. But, I am not amune to other diseases, right now I have COVID. But, then again I am blessed because it is the first time I have gotten it, and so far it is more like a head and chest cold, just miserable. May God bless you.

REPLY
@thenazareneshul

I had a PT once that ran me through horrible exercises, someday I could barely get back out of bed again the next day. Anyway, during all of that she told me about her son, a minor, who had some heart conditions and she used an adjustment to his body, just under where his rib cage meets in the middle. I was there for leg pain that included all the way down one leg and a whole hip. Neuropathy was the best diagnosis they could come up with it. Which is why they dumped me on her. She suspected some scar tissue from way back in my medical history and did (as a last resort) a pinch pull that was very painful, right about same place. That's also where you would have had chest compressions. It worked on me, for 2 years. No pain at all. Then, it came back, and worse because I then had falls too. I think you are onto something, but I never could get her to do it to me again. She said she didn't remember doing it, two years later when it came back. Internal scar tissue can and does do a lot of things.

Jump to this post

Thank you for your input. I certainly hope your therapist can remember what she did for you. Maybe it would be worth going to a good deep tissue message therapist and have them work on the area for you. Bless you

REPLY

My husband has severe neuropathy in his hands, caused by the drug OFEV for pulmonary fibrosis. His neurologist tried him on anti-seizure drugs, used also for neuropathy, but side effects were horrible & he could not continue it.
He has lost all dexterity in his fingers & needs adaptive utensils. He has severe hand pain all night long, uses heat pack gloves or ice pack gloves, with minimal help.
Anyone else dealing with hand neuropathy? He has some neuropathy in his feet but nothing like the hand pain. He is currently on Lyrica 150 mg twice daily but I think this could be increased at his next visit.

REPLY
@tuckerl96

Thank you for your comments. I too consider myself very blessed to be unencumbered by this disease it is very debilitating. So far the Neuropathy had not returned. But, I am not amune to other diseases, right now I have COVID. But, then again I am blessed because it is the first time I have gotten it, and so far it is more like a head and chest cold, just miserable. May God bless you.

Jump to this post

tuckerl96 Did you get your COVID SHOTS when they became available to us? I had 3 since the beginning with NO side effects. I wear mask in public & wash my hands thoroughly when arriving home. I also keep sanitizer in my car & attached to my bag. Also, keep my hands away from my face. This is important. This recommendation came from a doctor in the HOT ZONE OF COVID when Covid first arrived. I have this note on my frig. as a reminder before & after being in public. So far, it has kept me safe from Covid. There must be something educational to his words. Some people say Masks don't work. I am a firm believer in them. Doctors when operating wear Masks for a reason. Food for thought. My relatives never took the Covid shots & never will. All of them had Covid 4+ times. Apparently, it DOES NOT build up their IMMUNITY at all. I will continue heeding the doctors instructions and feel safe in doing so. You may continue to get Covid but keep in mind YOU do not know what affects it will have on your body in years to come. My niece lost her taste & smell. If you like being miserable don't get the shots. IF you wish to play it more safe I recommend shots. If you had shots get your booster. There is a NEW Vaccine coming out in September it should take care of NEW sort of Covid called FLIRT. The shots work for me with no side affects. Keep in mind you are NOT IMMUNE to other diseases. You do not need anything else to deal with. I wish you a good & quick recovery. Prayers for you. Regards, Boomarang

REPLY
@boomarang

tuckerl96 Did you get your COVID SHOTS when they became available to us? I had 3 since the beginning with NO side effects. I wear mask in public & wash my hands thoroughly when arriving home. I also keep sanitizer in my car & attached to my bag. Also, keep my hands away from my face. This is important. This recommendation came from a doctor in the HOT ZONE OF COVID when Covid first arrived. I have this note on my frig. as a reminder before & after being in public. So far, it has kept me safe from Covid. There must be something educational to his words. Some people say Masks don't work. I am a firm believer in them. Doctors when operating wear Masks for a reason. Food for thought. My relatives never took the Covid shots & never will. All of them had Covid 4+ times. Apparently, it DOES NOT build up their IMMUNITY at all. I will continue heeding the doctors instructions and feel safe in doing so. You may continue to get Covid but keep in mind YOU do not know what affects it will have on your body in years to come. My niece lost her taste & smell. If you like being miserable don't get the shots. IF you wish to play it more safe I recommend shots. If you had shots get your booster. There is a NEW Vaccine coming out in September it should take care of NEW sort of Covid called FLIRT. The shots work for me with no side affects. Keep in mind you are NOT IMMUNE to other diseases. You do not need anything else to deal with. I wish you a good & quick recovery. Prayers for you. Regards, Boomarang

Jump to this post

I had Covid in the fall of 2021. I haven’t been sick since then and I have never had a Covid shot. I do have some symptoms of neuropathy (hot, tingling feet) that only bother me after I have been sleeping for about 3 hours at night. It is gone when I wake up in the morning. I am so thankful I feel good the rest of the time and can exercise without any pain. I am off all prescription medication.

REPLY
Please sign in or register to post a reply.