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Neuropathy making a comeback

Posted by emcg @emcg, Oct 19, 2019

Hello all - I’m new to the group. I’m a 43 year old female in good health. About 2 years ago my feet started burning and I saw a neurologist who sent me for an MRI. When that came back okay, she tested me for a bunch of conditions and found nothing. After her physical exam, which was also fine, she concluded that my body probably had an overreaction to a common virus and my nerves were damaged as a result. She figured it would fade but I saw her again six months later and it had crept up to my shins which were tingly. She said that i might be stuck with it. I asked her so many questions about what I could do to fix it but she had nothing for me.

A year later it had taken over my life. I felt like the tingling sensations were all I thought about. I was so anxious all the time. I was lucky enough not to experience pain from it but I felt this constant dread. So my GP referred me to a new neurologist who was so nice and caring. He sent me for another MRI, came back fine, he did blood tests for a ton of things, all came back fine. He said that I should just exercise, eat healthy, and live my life.

A few months after I saw him the sensations started fading and for almost a year they were so subtle I hardly thought about it. But as of two weeks ago, it’s come back and I’m so terribly disappointed and worried. This time there’s an achiness to it that wasn’t there before. I saw my GP and she’s sending me back to the neurologist and also sent me for B12, folate, D, thyroid testing.

I’m really afraid and worry about what’s in store for me. I have two little kids and a husband and I’m so fearful. I exercise regularly and feel strong, it’s so disconcerting to have these weird sensations rear their head again.

I didn’t expect this to make a comeback. Is it common for it to come and go like this? Is it okay to continue exercising in the meantime or am I making it worse? Is there anything else I should be doing? Any advice is much appreciated. Thank you.

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Profile picture for swamplady
swamplady | @swamplady | 1 day ago
In reply to @jeffrapp "HI emcg I have been diagnosed with Small Fiber Peripheral Neuropathy. I am also at times..." + (show)
Profile picture for jeffrapp @jeffrapp

HI emcg
I have been diagnosed with Small Fiber Peripheral Neuropathy. I am also at times angry, worried, and disappointed, etc. It's natural.
From the information you provided, I can only guess about the medical aspects of what you describe.
It sounds like you found a neurologist you like. He or she should be able to proceed in a step wise manner to try to come to an accurate diagnosis.
Usually, this involves first taking a complete history and physical, then doing certain lab tests based on that. The results of those tests often lead to others. Finally, if indicated, tests such as nerve studies (called an EMG/NCS), skin biopsy, and perhaps others. They are generally not all done at once.
The goal is to make a diagnosis, then try to find a cause, which can be treated medically. Unfortunately, as with me, this doesn't always happen, in which case it's called idiopathic (unknown cause). What's left is to treat the symptoms.
It sounds to me like you're in the very beginning of this process, and don't yet have a diagnosis.
Peripheral neuropathy, if that is what you have, is a very frustrating disease for the patient, and often the doctor. The symptoms vary from day to day, and unfortunately, the medical treatments are not always very good. That means you have to become sort of a treatment sleuth, trying different things, such as some of those mentioned in this forum, and others. Eventually, you will find something(s) that help. Also, at your age, I bet research will find a treatment and/or cure eventually.
Try not to project too much into the future. Worry and anxiety will make it worse. If you find yourself suffering with these emotions, talk to your doctor. There are many things, including traditional and alternative treatments, that can be done to help with negative emotions.
You are doing all the right things so far, such as exercise. I am 74 years old, and can still ride my bike, sometimes 30 miles a day, making adjustments for my burning feet. Riding keeps me fit, and makes me feel good about myself.
You have a young family, which is both a blessing and an obligation.
If you'd like to private message me for advice and what my experience has been, please do so. I am a retired ER doc, and these days, unfortunately, somewhat of an expert in peripheral neuropathy.
Good luck.
Jeff

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@jeffrapp
Following neuropathy, gabapentin use and related symptoms. 5 yrs ago had bunion surgery and 2 weeks later follow up with surgeon. I had nerve pain in the left side of body as well as a burning pain in my mouth (Burning Mouth Syndrome) no help. FSU in a study using ALA for 1 yr. No help. Everything I eat hurts my mouth. 3 different neurologist, emg, mra, MRI all and nothing conclusive. Taking 200 mg gabapentin couple times daily and at bedtime. Burning pain nightly in my legs and torso about 2:30am cold on the outside and burning up inside. My memory is getting worse with the medicine. I hate bedtime.
Swamplady here in FL.

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v8auto | @v8auto | 17 hours ago

Sorry to hear of your problem.
Yes, it can vanish then return.
In retrospect, it started for me in 011, age 60, didn't know what it was, burning sensation in lower legs, then it vanished and I thought no more of it. Then in 023 it came back and we are still together, so to speak.
Might have been something to do with the nitrofurantoin I took that year for a UTI, might not.
So often, it just starts, no traceable reason.
At the moment it's just in my feet & lower legs, and I hope to goodness that's how it stays. My balance is not so good, and at night it can be a nuisance but no pain as such.
What can you do... to make it go away, if it's PN then nothing. Sorry.
Depending on your symptoms, whether it's painful or keeps you awake or results in wobbly walking, you may be able to moderate the symptoms and if you read the forum you will find things that have helped various people, but we all seem to experience PN is our own way, no two quite alike.
Exercise is good. It will do no harm.
Keep your legs strong. If the communication between legs and brain starts to slow down, as in my case, the muscles will become a trifle lazy. Exercise will help to keep them working. Toe stands, squats, the usual.
There is probably nothing you can do to make it worse, alcohol perhaps or perhaps not.
An electroconductance test will confirm or otherwise how things stand as regards your nerve function. But it will not point to a cure. Sorry.
Hopefully it will remain at the nuisance level. Try not to worry, silly thing to say, but you can live with a nuisance, and that's all it may be.
Good luck.

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