Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
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Hi @steeldove, I thought I would answer your private message here in this discussion since you mentioned letting other members know that Mayo Clinic has started making appointments again. The following page gives some information on what to expect – https://www.mayoclinic.org/covid-19. I think it's great that you don't have to make two trips in July to the Pain Medicine department and can take care of everything with two separate video conferences, one with the doctor and the second one with the nurse. I would be hard pressed to make two 12 hour trips myself. If you haven't seen the following discussion already it might be helpful to check it out.
Telemedicine: How to make the most of a virtual doctor visit — https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/
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@johnbishop If the May teleconference with the doctor is sufficient to determine what sort of device to use, I expect I shall be driving up to Minnesota to have the device implanted. One trip I can manage!!!
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@johnbishop I was given that information by a osteopathic physician who specializes in osteopathic manual manipulation and who I see for pain management. He explained that one of the fibers is sending to my brain a message that's causing numbness and the other fibers is sending the pain message. Of course, his explanation was much more detailed, but that was the gist of it.
WOW! Interesting. Thank you! I wonder what my Neurologist has to say about this. So far my neuropathy has affected my bladder, bowel, and so much more in my body. Nerves aren't communicating as they should. It's very brutal. I'm sure I have autonomic neuropathy besides SFN and large fiber. And medium LOL! Warm regards, Sunnyflower
Hi @sunnyflower and welcome. There's nothing to being included in this ongoing discussion except start posting. You are right, nerve disease is a terrible affliction. Feel free to describe your situation in detail and include anything you have tried to relieve the pain. I got started on this and other forums because of the frustration with reading all the info that exists online of medical websites written by health practitioners. I found that I got more practical and useful info from the people who were actually living with peripheral neuropathy rather than merely researching it. I think you may also find this more useful for you as well. Best to you, Hank
Thank you so much. I think I described my neuropathy but may have forgotten part of the symptoms. Sting/burn/pain/numbness almost EVERYWHERE!. The pain is so great that I find times I'm breathing like I did when I was in labor! Also, my heart beats irregular at those times and I am literally crawling out of my skin and literally fighting for my sanity! Some of my organs are affected; nerves not communicating. Awful. Just info, no complaints, I'm very blessed. I'm a woman of faith and my God is with me every step of the way. I trust Him in it. Warm regards, Sunnyflower PS: Sorry for any repeats, I am so new at blogs!
@sunnyflower, @jesfactsmon and other members with neuropathy — we started a new discussion to collect the members neuropathy stories so that we could have one discussion that just includes the neuropathy stories of members with no comments or questions between members about the individual neuropathy stories. This way a member can read through the different stories and more easily find someone that has similar symptoms without all of the back and forth discussion. Please feel free to join in and share your neuropathy story here:
Member Neuoropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
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@johnbishop I'm ok with you removing the comments from the new "Share Your Neuropathy Story" thread between @lorirenee1 and myself, and placing them elsewhere. This will keep it cleaner and I think (hope) Lori would agree.
Hi Rachel, in the spirit of John's desire to keep the "Share you neuropathy stories" discussion cleaner, here is my reply to your last post from over there made on 5/13 (John, @johnbishop sorry for posting replies over there initially):
Rachel, you mentioned that you do have some ability to walk. That is VERY good. Hopefully that will not get worse so you can at least mobilate to do at least the basics around home. But odd that the legs developed this condition. Sounds similar to MS. If it were MS and they have MRI'd your head since it developed they should have noticed lesions. If it was never looked into before this you might bring it up with your PCP. You have also mentioned before that your hips or upper legs have on occasion sort of frozen up like stone or something, which must be related right? If this started from a b12 deficiency it would seem like this stuff would all be getting better right, assuming you are absorbing enough b12 now? Perplexing. Must be more going on, no? (Right, you're saying, but what???!!!). God help anyone who develops either a nerve disease or an endocrine related disease. The two great unknowns to medical science. I'm sure advances are coming, but in our lifetimes? Maybe not.
One thing you and my wife have in common it sounds like it perfectionistic tendencies. As well as being a tad driven (busy busy busy). This was always my wife, in younger days. Illness has slowed her down and softened her perfectionism (somewhat). It seems like there may be a connection between those traits and the illness that has befallen you both. One thing about illness, it gets your attention, whether you like it or not. You have to stop and pay attention, which in a way is a good thing, or would be without the steep price tag. . Another commonality you have with Linda is corneal disease. She was diagnosed in 2006 with Fuchs dystrophy, and the doc told her she would eventually have to have corneal implants. Though her sight has worsened since then her current eye doc has told her that she should not worry about it until it's time for her to have her cataracts removed to have her corneas replaced. My wife's body and my old Datsun 710 which I owned back in the eighties have a lot in common. They are/were both broken down in a lot of ways and much has had to be jury-rigged to keep them both going. They both have (or had) long medica/mechanical rapsheets. Linda's has grown and grown as it sounds like yours has, though in your case it's happened much faster, 4 years as opposed to, how many for Linda, 20? 30? Anyway, you both are inspiring to me.
I will end for now. Best, Hank
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Good morning Hank
Thanks for reaching out in this thread. Amazing about Fuchs dystrophy! Its uncommon and I've inherited it from my father who, in his 60's had full corneal transplants. I progressed quicker unfortunately, but knock on wood, my vision is incredible now. Amen! The photophobia remains but I decided long ago to accept that over poor vision. MS was a concern at one point but my spinal tap ruled out auto immune diseases. I'm glad to be Mayos guinea pig for possible better conclusions. I've often wondered if my health conditions were a round about way of slowing me down and making me pay attention to myself for a change verses everyone else. Not only has this been a physical journey but, a mental one as well. Regarding Small Fiber Neuropathy and its underlying cause…yes, b12 has been regulated and specific symptoms have vanished, however, I feel I've been left with some pretty poor "souvenirs" which makes me feel idiopathic in the end. Finding my underlying cause has not been this huge revelation in my so called fix. I feel like the damage has been done. And I love your analogy of a broken down car! I agree. I've referred to this myself actually and thought myofacial release is like going in for a tune up to help keep the car running, and healthier foods is like putting good gas in your car, etc, etc…
Be well today Hank and if you (or Linda, via you) ever want to talk further (so we don't completely bore the other readers – wink, wink) please feel free to private message me.
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@sunnyflower Hello, I'm answering your response to "My Neuropathy Story" in this thread in order to try and keep that thread with facts only for future neuropathy sufferers.
I very much appreciate your kind words and thoughts. I agree, this has been one tough journey for us all. I'm happy that you turn to your faith to see you through and wish you the best going forward. I hope positivity remains in your heart, despite your pains.
I must leave you with 2 emojis….🌞 🌻 Sunnyflower
Hi Jeff @jeffrapp , I am posting my response here to the story you put over on the "neuropathy stories" discussion. Just want to reduce distraction from the stories themselves, which are fascinating. I read what you wrote and see you have been diagnosed with SFPN and have been through a gamut of drugs and other treatments "every medication in the book" as you say. My wife suffers from neuropathy in her feet from chemo in 2014. She has tried a number of things as well. She does not do well with drugs so, other than gabapentin, which gave her side effects but no relief, she has mostly tried over the counter stuff. After the many creams, gels and other topical things that we have found over the past few years, I thought I would tell you about something she started using recently. It is called Penetrex. I found out about it online somewhere and went to Amazon to see the reviews. One review really caught my attention, which lead to my suggesting to my wife Linda that she try it out. She has now been using for only a few days so far and the jury is definitely still out, but she has been guardedly amazed so far. Rather than say more about it I will just place the link to that one review here by a very sincere gentleman who, like you and many others, has been through it all with PN. Here is the link:
When people such as yourself describe their foot pain from PN I have an intimate observer's knowledge of what you are talking about as I am my wife's advocate and researcher and have been with her through all of this hell so far. Like you, our travel as well as ability to do things together away from home, has been severely curtailed. Another person who would be a good resource for PN in the feet is @lorirenee1 who has been suffering with this for a long while also. Wishing you all the best in your pursuit of a way to transcend the sad PN nightmare you find yourself in. Hank
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@jesfactsmon Hi Hank, After reading such an awesome review of Penetrex, the one you posted, I just had to order it. Thanks so much for sharing. I had given up on everything, but this, I just had to try…..Thanks much!!!! Lori
Lori, I hope you read the review. It's better to order the roll-on. If you already ordered from Amazon you can probably cancel the order if you do it right away. I've done that many times. Best, Hank
Oh okay, I see you said you did order the roll-on. I'm glad. Linda agrees with the reviewer that the roll on is really clean and not greasy. And believe me, if Linda says something is not greasy, believe it. I've never known anyone so down on grease as she is. Just to fill you in a little more, this stuff does not eliminate your pain. But like the reviewer said (and Linda so far agrees) it reduces his pain a few points (Linda says a third, like from an 8 to a 5 for example) which ain't bad. She puts it on and then puts her feet in front of the fan and she says for the first ten minutes, total relief. Then the reduced pain level thereafter. So far. And It may disappoint ultimately, like most things do, but you always gotta hope, right?
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@jamesinsonoma Hey James, I replied in this thread to help keep the Journey Stories thread a little more pure.
The doctor is using a device from Nalu Med. Their website is nalumed.com. Check out the Applications tab. For the trail the device will be on the outside of my leg. If successful, it will be embedded just above my foot; one on each leg. The doctor tested me with a nerve block in each foot to see if I would be a good candidate. After the nerve block I was able to walk around for 30+ minutes virtually pain free. The nerve block wore off after a couple of hours. I'll post the results of the trail. The trail is scheduled for late June.
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@fredjan2016 I look forward to hearing the results of your trial.
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