Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
Hi Peops my story has an unusual result I was diagnosed with PN when I lived in Australia I was working as a bookmaker on a Masonic charitable golf day
When it finished I didn’t get collected as planned so had to walk back to the club house and with out any warning the pain of walking was unbearable
So it was of to the Drs who referred me to the specialist there followed MRI scans sensitive tests and even a HIV test (negative) it was after all these tests I was told I had PN slowly it was getting worse I moved back to the UK more tests and was told it shouldn’t get any worse How wrong that was over time I’ve tried several off the recommended painkillers gabapentin endone OxyContin solpoldol & morphine the pain was getting worse the pain killers were playing with my mind and dragging my body down I even discussed cannabis with my Dr who would try it if it became legal, but the pain was becoming unbearable often at an 8/9′ pain leval action was needed so I took my self off of all pain killers and got the phone no of a woman here in Ireland called her up and had a good chat with her spoke of my problems and asked her if she could or would try to help. Although she had never attempted any thing like it she was prepared to have a go if I would accept it might not produce results l met up with her some days later and spent 2+ hours with her with a pain leval of the 8/9 range when we finished the meeting my pain leval was down to a leval 2 that was some 4 months ago and that is how it has stayed ever since what a difference it has made to my life and it’s great to have a good nights sleep , now your all wondering what could replace major pain killers to such a degree well it’s something I have always believed in HYPNOTHERAPY
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Hello @freakers. First, I would like to welcome you to Connect and thank you for posting about your battle with peripheral neuropathy and other medical issues. I moved your post in to an existing long discussion on dealing with peripheral neuropathy. I did this so you could meet our many members already discussing this topic. If you are replying by email, I recommend clicking on VIEW & REPLY at the bottom of your notification so you will be taken to the full discussion. You can read through some of the messages and get to know other members.
I have been “dealing”‘ with peripheral neuropathy for several years. Mostly increasing numbness , extending from feet up past knees. So far very little pain. I get Massage to feet and legs weekly and tak a lot of Shaklee food supplements. Also am 95 years old and healthy except for the Neuropathy.
Liked by John, Volunteer Mentor, swiss
Anyone that has pain with their neuropathy should try something called Ketamine Therapy. It is an IV that they use. It has worked for me so far.
They recommended 4 hour treatments. One day 2 hours and the next day they doubled the dosage for another 2 hours. It is very expensive $700 for 2 hours. But, it has been worth it for me to not have the pain all the time. Look it up.
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor
i have chemotherapy induced neuropathy in both my feet. I do not want to go on the normal pain meds as the pain is not a problem but they are just numb. I cannot feel them, temperature, if I cut myself, etc. It has been a year since I stopped chemo. I went to my podiatrist and he recommended laser treatments. ha s anyone tried this ? I see those laser clinics for foot, back or just about anything else you want treated. No side effects however, FDA approved but not covered by insurance. He kind of turned into a salesman pretty quick and I am wondering if anyone has tried this. I know the maxchines are expensive. He said only three to six treatments and i will know if it is going to work.
Thanks for listening, Carol
Earlier this year I had a scanner laser made up for me emitting about 1000mw in the infra red, 810nm, I applied about 1joule per cm2 over my leggs and feet which took about 30min. I repeated this every 2nd day. I found that the burning pain increased in lower leg and feet. This usualy is a positive sign for the first treatment. I reduced the dose to 0.5 joule/cm2 and found similar increase again in burning pain. So I stopped for a week and starrted again with even lower dose. The burning pain increased again. After about 15 treatments I gave up. In contacting several MD`s specialized in lllt (low level laser therapy) I found that there were no neurologists or anaesthiologists who had any experiences or publications other than on damaged peripheral nerve repair but not degenerating as in PN. So I would have to check the internet again and MedPub peer reviewed publications on application of lllt in PN (any kind, including diabethic PN) before setting new parameters to continue trying. Meanwhile I had to go back to opioides but much lower dose in order to keep my quality of life in an acceptable level. I am sticking to the protocoll but cannot get certain products into France of Switzerland or Germany. So I take substitutes with similar contents and see what happens. Warm weather means lower pain level than cold weather, rain and cold winds. So i am moving South when the cold comes and keep my fingers crossed.
Liked by John, Volunteer Mentor
Today I was told I also have Ineffective Esophagial Motility. Anyone else?
I have never known of red light for neuropathy. I am familiar with it being used for brain injury. Try Ketamine therapy.
You are surely fortunate or blessed not to be suffering pain, and that you are in such great health at 95. That’s more than I can say at 67. I have wondered if massage therapy would help me with painful PN, but haven’t yet tried it. I’ll have to give it some consideration.
Where is the article that mentions red light for neuropathy. I searched adjoining articles but could not find.
Tis me again. Forget question. I found it way down in some previous notes. I was a questioning where the original article on red light was located to get more info.
Hi Jim my name is John, my first time responding on here, just joined yesterday. Anyway don’t know your issues but I had a bad back for years and tried chiropractors for a few years then I decided to try massage therapy even tho insurance wouldn’t pay for it and went every 2 weeks for an hour and got more relief with massage , may have to try a few to find aa good one but just check reviews first
Red light could be found under low-level-laser-therapy (lllt) or light therapy as such (LED and other non coherent ight sources) light has a positie effect on peripheral nerves, important is what the actual diagnosis of the desease is and what parameter are being set in the scientific studies published on the therapy.
Thanks for sharing your experience, John @johnbroward
I will definitely look it up, thanks
Liked by Teresa, Volunteer Mentor
I was diagnosed with SFN recently. I have read a lot of post but mine is different. I feel like I am having a heart attack everyday. I had to go to Mayo Clinic in Florida to get answers. I have shortness of breath, pressure in the center of my chest with pain in the same place, get sharp stabbing pains on both sides mostly on the left side around my heart, tingling in hands, groin, and face. I also hurt in between my shoulder blades, bowel and bladder issues, blood pressure drops when I stand up and stays low. I have been dealing with this for over a year. I am unable to work because of it. I also can not sleep, I have PLMD. My feet stay sore and swell. Eyes are effected, my hearing also. There is more but as you can see I have not quality of life.
@clayhere Hi, Clay. Welcome to the way things really can be. Yes, you have a lot of issues, but I wonder about them. That is, it may well be that you are not having an attack, but something else. I learned the hard way not to be too quick about diagnosing myself. What you have could be spleen, pancreas, or pericardia. Any kind of inflammation will cause this pain. the pericardia might bring in the drop in blood pressure, and the pains in the shoulders, etc. Keep pushing your doctors, and test everything you two can think of. WBC, protein, nerve signals, etc. But hang in there. It has taken me decades to get anywhere near the truth
Liked by John, Volunteer Mentor, lillyanne
Hello @clayhere, welcome to Connect. I’m glad you found us and thank you for sharing. You have a lot going on. While your post is somewhat different you are not alone. I’m sure other Connect members share some autonomic neuropathy symptoms and I’m hoping they will be able to share what has helped them.
You mentioned you had to go to the Mayo Clinic in Florida to get answers. Can you share what you found out with us?
It is important to keep asking questions and pushing your doctors for answers. You are your best advocate and the more you can learn about what’s going on with your health, the better chance you have of improving your quality of life. Hoping that you will find something that helps you soon.
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