Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016
@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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Oh and here’s a good one… I also have an “accessory” spleen! It’s what the radiologist read on the MRI as a lesion. But then the Gastro doc told me about 10% of the population have this accessory spleen. I’m being referred to a oncology/hemotologist because the spleen I am told has to do with your blood. . It’s always an adventure!

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Thank you for sharing.. It makes me feel not so alone. Every time I turn around I have a new “unusual” diagnosis. I’ve not even revealed ALL of my disorders on the Mayo connect yet, but I appreciate the mentor help here!
I have been instinctively already been doing all of these things too. I can choke so easily . but the Gastro dr’s nurse told me that there is nothing that can be done for it but that they want me to come into the clinic to discuss it with the Doc. I live in NE Missouri. I want to go to the Scottsdale Mayo again I used to live in Mesa and went there in like 2009. I hope we can go forth the winter. If so I’ll see about making visits to address everything at once.
So you are saying that Neurologist would handle this disorder, hmmm. I have one for my (FGFR3 Antibody cause)PERIPHERAL NEUROPATHY AND ONE FOR SLEEP APNEA. THIS IS HELPFUL to know what you are doing and I can get an idea of who to see. I’m sorry for your loss and I understand how the genetics can be causing you distress..I am intrigued that this is neurological as it would go along with my other Neuropathy issues, possibly caused by the antibody!

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@darlia

Thank you for sharing.. It makes me feel not so alone. Every time I turn around I have a new “unusual” diagnosis. I’ve not even revealed ALL of my disorders on the Mayo connect yet, but I appreciate the mentor help here!
I have been instinctively already been doing all of these things too. I can choke so easily . but the Gastro dr’s nurse told me that there is nothing that can be done for it but that they want me to come into the clinic to discuss it with the Doc. I live in NE Missouri. I want to go to the Scottsdale Mayo again I used to live in Mesa and went there in like 2009. I hope we can go forth the winter. If so I’ll see about making visits to address everything at once.
So you are saying that Neurologist would handle this disorder, hmmm. I have one for my (FGFR3 Antibody cause)PERIPHERAL NEUROPATHY AND ONE FOR SLEEP APNEA. THIS IS HELPFUL to know what you are doing and I can get an idea of who to see. I’m sorry for your loss and I understand how the genetics can be causing you distress..I am intrigued that this is neurological as it would go along with my other Neuropathy issues, possibly caused by the antibody!

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Another note.. It’s been happening for YEARS! I’m feeling just to finally have an answer as for liked 30 + yrs I’ve been told nothing could be found. It’s been an issue for soooo long. I even shy away from pills or vitamins that are too easy to get stuck.

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

Jump to this post

This is what they called it but when I see the official report, I’m sure it says more.

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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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@freakers

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.

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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.

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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.

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@caf132

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

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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.

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

Jump to this post

I have never known of red light for neuropathy. I am familiar with it being used for brain injury. Try Ketamine therapy.

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@materk

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.

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Hi @materk

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.

Jim

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