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Member Neuropathy Journey Stories: What's Yours?
This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.
— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?
Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?
What's your neuropathy story?
Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.
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Keep walking! I'm not a medical professional, but have certainly done my "studies' since developing Peripheral Neuropathy in both feet. Not sure exactly why, but it did begin after both hips were replaced. I have had some (but not much) help from medical professionals. You will need to take the lead!
I'm replying to your message as a "head's up". You are early enough in this journey to make a difference, so do your studying and offer your body all the things it needs to encourage the repair of the damaged nerves causing your numbness. You need good circulation providing plenty of O2, vitamins, minerals, etc. And, reduce inflammation. So . . . diet, exercise and a regimen of recommended vitamins and supplement will make a difference.
I like to recommend this website for a long, thorough explanation of Peripheral Neuropathy, especially recommended treatments!
https://www.foundationforpn.org
And one of my favorite videos for an overall explanation is this one:
https://youtu.be/NH8UAOMLxV4?si=t2hfYA7XkgX3TlvD
I wish I had known what was going on sooner, but feel I've done a good job keeping this condition at bay. I use a small vibration platform (with heat, cuz I love that) daily and a TENS like foot pad occasionally. I take R-ALA, Benfotamine, and a few other recommended supplements. If you decide to increase your Vitamin B's, avoid additional B6. Too much can cause neuropathy! I avoid sugars, including alcohol, as much as possible to keep inflammation levels down. And I try to get a decent amount of exercise daily.
Good luck with your journey and get on with it!
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8 ReactionsThank you MM..This was a clear, concise and helpful post.
I have just started experiencing PN during the last year and am exploring the options to keep it at bay moisturizing and massaging my legs after my morning shower , taking all the suggested suplements, 2hrs of intense PT daily to include stationary biking,compression socks..I’m looking at using The Accelera stimulation device. I’ve exercised my way out of all my issues..that and supplements,herbs and a morning shake with everything in it. Good Luck MM
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5 ReactionsHey there, Mike @mikem75, welcome to Connect. Thanks for reaching out. Oh dear, sorry that my neuropathy story gave you anxiety - it did me too back then. Mine was a rather complicated situation, but I'm doing better.
Having numbness in your foot since knee replacement is unfortunate and as a runner, a little scary I'd imagine. Have you already made your PCP aware and are now heading straight to a neurologist in July? Can't come quick enough, I bet. How has walking in your Hokas been working for you?
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4 ReactionsReading through some of these stories is very humbling. Unlike most of you, I'm extremely lucky that my neuropathy doesn't really involve pain. It sounds like pure torture, and then the meds themselves have horrible side effects, as @rwinney and @gpgarrison describe. All I've had to deal with is my calf muscle shutting down. It happened suddenly and with no injury almost 2.5 years ago. There was no pain, but I was just limping one day, and couldn't run at all. I thought it was a pinched nerve or something minor that would go away. If it could start abruptly, I hoped there would be a quick fix. Nope.
Now, similar to many of you, I've seen more specialists than I can remember. I've also been quite disappointed that the doctors aren't usually very good investigators, unlike on shows like House. Instead, they often think I have whatever their specialty is. A spine injury doctor thought I had a herniated disc, despite an MRI of my back not showing anything. (The corticosteroid he injected in my spine did nothing.) A physical medicine doctor thought he saw a schwannoma on my tibial nerve when he did an ultrasound, even though an MRI of my leg didn't show that. A peripheral nerve surgeon thought releasing my proximal tibial nerve would solve it, but no. My neurologist thought my EMG results were within normalcy and that it would go away on its own. Wrong. Of course, between each of these specialists there were months of waiting for the next appointment or referral. In the meantime, my calf muscle completely atrophied. I tried two rounds of physical therapy, but clearly the muscle wasn't being enervated so the therapy was useless.
Last year I finally went to Mayo Clinic, and like you guys, I had a ton of tests done. I've never had a radiofrequency ablation like Rachel, but in total I've had 7 or so MRIs, 5 EMGs, a spinal tap, a sweat test, 2 quantitative sensory tests, ultrasound, and more blood tests and genomic tests than I can count. I also got a biopsy of the tibial nerve that enervates the calf muscle as well as my sural nerve, which left my foot permanently numb. So, the Mayo team were good investigators! Ultimately, they thought I have focal chronic inflammatory demyelinating polyneuropathy (CIDP) and possibly also microvascilitis.
They had me do three months of methylprednisolone infusions at my local cancer center. This is where I had a litany of side effects like you guys: insomnia, racing heart rate, skyrocketing blood glucose and cholesterol, shortness of breath, constipation, etc. During the steroid infusions, my right hemidiaphragm stopped working. This makes me feel like I can never quite catch my breath, so I gasp sometimes, and this does sometimes include pain. I had an X-ray, CT scan of my chest, fluoroscopic sniff test, 2 pulmonary function tests, a sleep study, and a diaphragmatic EMG. The conclusion is that the right side of my diaphragm is paralyzed, so my phrenic nerve is somehow damaged.
And on my 45th birthday, I returned to Mayo Clinic to see if my methylprednisolone treatment helped and to see what they make of my phrenic nerve issue. It turns out that my tibial nerve didn't recover at all. Now the team at Mayo Clinic doesn't know what else to do, so they just told me to come back in a year to see if anything changes. Intravenous immunoglobulin is another treatment, but they won't prescribe it since it costs so much that it will never be covered by insurance. Meanwhile, I'm worried that if my left hemidiaphragm also shuts down, I'll asphyxiate and end up intubated. Apparently this can happen in people with multiple sclerosis. But my team at Mayo thinks I may be stable -- not getting better, but not worse. I contend with the "not worse" part, seeing as my phrenic nerve stopped working. So, I'm looking into getting a second opinion with a multiple sclerosis neurologist.
But compared to you all, who have dealt with neuropathic pain for many years like @SusanEllen66, I have nothing to complain about. For now I just walk with two canes and have a hard time doing exercises at all like I use to, but maybe that's just how life will be now. I've had bilateral winged scapulae and an underdeveloped trapezius since birth as far as I know, which gives me painful shoulders, neck, and back. But it's always been part of my life. So now maybe these new problems will be too.
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4 ReactionsI have very bad neuropathy in hands and both feet, been on Gabapentin last 2 months, I don't feel any better, been messaging and that is temp. Relief, I wish there was real help for this problem, chemotherapy and surgery is done, have another surgery coming up in few months. Any help please??
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1 ReactionHi @amer123, I responded to your post in another discussion also. I see that you have already discussed treatments with your care team. I wonder if you might find this webinar on chemo induced neuropathy from the Foundation for Peripheral Neuropathy helpful.
Thank you so much, I will watch the video. Good day
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1 ReactionYes I would have your B vitamins tested. My B6 was very elevated as was my folic acid but my B1 was low. A lot of doctors won't check anything unless you ask them and I sister if necessary. I insisted to have my iron tested and it was very low.
I have had small fiber neuropathy for over 40 years now. Still functioning normally, but I have a lot of numbness everywhere. I get muscle cramps a lot in the evenings. But now I have very bad tremors. It started slowly and now my tremors are very bad. Hard to right something on paper or use my hands. I have not heard of this symptom for small fiber neuropathy yet. Can anyone help me with this?
Hi @kfrenc04, I haven't had the muscle cramps for quite awhile but have had them before, usually when I haven't drank enough water during the day. I too have some difficult trying to write due to some shakiness or tremors in the hands. I'm not sure if it has something to do with my neuropathy or just old age. I can still type pretty well but signing cards, writing checks or letters is the pits. There are quite a few discussions and comments by members on hand tremors. You might want to scan through the search results links while you wait for other members to share their experience - https://connect.mayoclinic.org/search/discussions/?search=hand%20tremors.