Learning Past Cause vs. Quality of Present Life?

Thanks Ray! I will definitely take advantage of the library😊

Welcome @kath737 ! We have the best mentors in this group! @johnbishop never fails to keep folks directed to the most reliable sources of information on various subjects and conversations that are helpful. He & others are also subject matter experts with personal experiences on a lot of various symptoms and recommendations for managing them for optimizing our comfort and quality of life. I have "met" so many folks so willingly sharing their trials and successes (or non-successes). Some help us stay focused on our need to keep our minds focused and positive. I think the biggest learning here is that no two people are exactly alike in this weird PN business, so there are no universal remedies that fit all. I'm glad you have a Neurologist appointment soon. I hope you don't hesitate to get physical therapy if that would help. It helped me get out of a wheelchair 7 years ago - I can't do so many things I was once able to do, but I'm grateful for what I can do. PT helped me regain balance, and keep muscles strong to compensate for the weakness the nervous system creates. I've been taught how to prepare myself if I feel I am falling, and how to get up. It's taught me how to try alternative things or invest in tools that help with what my hands and feet can no longer easily do. I hope you find solutions that fit your needs in dealing with this and find shortcuts to getting ideas from the wealth of experience in this group.

Thank you Debbie. Yourself and some of the other members have already helped me understand this weird condition better. I also joined a private fb group. One thing I have learned is to take this very seriously and get a jump on things. I am contacting PT today. I will also be returning to my water aerobics classes tomorrow. I had been a bit lazy for a few weeks. The two topics I will be researching are healthier eating(if there is less of me it will be easier to get around) and vitamin supplements.
What you have accomplished is incredible and very motivating to me. Thank you for sharing and I am so happy for you😊

Kathy - I am always learning. I've been dealing with this for 7 years and I was on my own trying to figure things for over 4 years. I was frustrated that my doctors (outside of PT) offered very little in helping to actually LIVE with PN. I couldn't get advice or recommendations on good pain relief measures (outside of Gabapentin), diet, vitamins, lotions, shoes or foot support, safety or support ideas, exercises, etc. I was so alone and knew absolutely nobody like me to talk to. Then I found this group and am overwhelmed by realizing I am far from alone. Diet... I thought I was doing all of the right things. I am not diabetic, in fact I have had some hypoglycemic events 3 years after PN came, so I have justified eating sugar regularly, including in my daytime beverages. I recently cut back. I accidently wasn't able to drink sweet tea for 3 afternoons for lunch and beyond, and then realized I wasn't feeling the slight stomach discomfort that I had grown accustomed to later in the day. I also had a little more energy, and my legs didn't feel as weak. I know now that folks on here meant it when they said cutting back on sugar is a good idea! I know to be cognizant of how I felt several years ago when I had low sugar episodes, but I know I have been overcompensating my intake and it wasn't helping my PN. This group amazes me and has helped in so many ways. I'm glad I've helped you & I know others will too. Please let us know how your appointment turns out! Debbie

I love Mayo Connect. It keeps me alert and oriented and involved in positive thought patterns. A daily reminder you are not alone and there is a place where you can ask, read, learn and if you want to share concerns.

I too am new to this group. I have terrible neuropathy in my hands and feet.
My right hand is much worse than my left and my left foot is really numb and
is going up to my ankle. I take walks often and take Tai Chi three times a week.
Tai Chi is wonderful for balance and keeps you moving. However, my neuropathy is getting worse. Any advice anyone could give, would be great.

Hi, leelees (@leelees)

Welcome! I'm glad you found us. Can you tell us a little more about your situation? Are you seeing a neurologist? Has your neurologist told you what sort of neuropathy you have? For example, I have idiopathic peripheral neuropathy. My only symptoms so far are unreliable balance and difficulty walking. I'm exceedingly lucky in that I don't have any pain. My diagnosis was one year ago, so I'm a bit of a newbie here, too.

I commend you on taking Tai Chi. If you're able to do Tai Chi, that's quite something! I wish I could. I do a lot of balance work, however, and that has prevented me from falling.

Again: Welcome! You've joined an extraordinary community. Pull up a comfy chair and make yourself at home!

Cheers!
Ray (@ray666)

Good morning, Debbie (@dbeshears1)

That was a wonderful post you left in reply to @kath737. It had great meaning for me. I have always been a great defender of my doctors, but in the past year since getting my PN diagnosis, I have grown acutely aware of my doctors' limitations. I'm still appreciative of the excellent work each does for me––each within their specialty––but of how ill-at-ease each doctor becomes if I should pose a question about my PN, a condition each regards as "outside" their specialty (and reasonably so).

This happened to me only this past Wednesday when I had an annual checkup with my eye doctor, a man I respect for the thoroughness and patience he brings to caring for my eyes. As the appointment drew close, I thought, What the heck, Ray, go ahead and ask." So I did: "Dr. A., is it even remotely possible that my PN or the vitamins and supplements I am taking for my PN could have anything to do with the health of my eyes?" (I was thinking of the old song: "The ankle bone's connected to the leg bone, the leg bone's connected to … " 😀 ) From the look on his face, I was asking Dr. A. to step out of his specialty. "Good question, Ray," he said. "I'll ask my colleagues." And he probably will; he'd that kind of guy.

So your post, Debbie, was another reminder of how much we're on our own when dealing with many of our medical professionals––but also, on the flip side, how valuable this forum is in letting folks with PN know they're not alone.

Ray (@ray666)

Have you seen a neurologist? I did and was diagnosed with Chronic Inflammatory Polyneuropathy.

@ray666 Ray, the comment about the eyes did grab my attention. I've worn glasses for reading (only) for about 25 years, always perfect eyesight beyond 3 feet. When this PN started up about 8 years ago, my vision changed. I have distorted vision in left eye, and it was a head scratcher for my eye doc when I asked if this could have anything to do with a recent diagnosis of PN. Literally, after scratching his head, he said "I don't think so" without a convincing facial expression. You know, nose wrinkled up and eyes squinting. I now see a retina specialist and the doc does not think it is due to PN, it is just old age. Oh, OK...that makes me feel better! Frankly, I'm not so sure. The timing is just a little too coincidental. By the way, when my PN started up years back, it all started on the LEFT side...left toes, left foot, etc.
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