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.

Liked by rwinney

Hello @emcg, Welcome to Connect. One thing I can share with you is that you are not alone in how you feel when symptoms come and go and you aren't able to find out what is going on with your body. It's good that you are asking questions. You are your best advocate and learning as much as you can about your health symptoms and condition is the key to finding an answer. There is a post I would like to share with you in the Women's Health Group

Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

The above post is the story of Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome. She also has a TED Talk – What happens when you have a disease doctors can't diagnose
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I’m not sure if it is an option for you but if it is, Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

@jeffrapp, @artscaping, and @lisalucier may also be able to provide some suggestions for you. Are you able to share if you have been given any specific diagnosis or if you are on any medications?

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Hello, glad you wrote in. I'm very sorry to hear of your troubles and concerns. Being a young mother and a wife makes it that much more difficult to handle. You are doing the right thing by following up with your Drs and staying on top of your symptoms. Ruling out possibilities is the way to go. Keep up the good work!

I wish you all the best with results. One day at a time is all you can do for now. Keep us posted and I hope your children give you the best day ever and take your mind to happiness today!

Rachel

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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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@emcg and @jeffrapp I'd like to encourage you to share your experiences with together in the forum as the value in an online community are the public group discussions because they not only help the people actively participating in them, but also the people reading them and learning from them.
It is awesome that you have chosen to be an active, participating member of the Connect community. We look forward to getting to know you more.

@emcg I'd like to ask as @johnbishop did, are you able to share any diagnosis or medications you've been given?

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Hello again all –

Thank you @johnbishop @jeffrapp @rwinney @ethanmcconkey so much for all your replies. In answer to your questions, no, I haven't been given any specific diagnosis. The first neurologist I saw said post-viral neuropathy (but there was no specific virus I had been sick with). The second neurologist I saw said neuropathy of unknown origin. I'm not taking any medications.

Last week I got all my blood test results and overall they were good. Liver/kidney function tests = normal. Full blood count, normal. Vitamin D = 60. Vitamin B12 = 605, Folate = 28, Thyroid function tests = normal. The only result that didn't come back in normal ranges is my iron studies.

My ferritin is low at 28 which is what I wanted to ask all of you about. I've had iron deficiency for last least six years although it could have been low before then but I'd never been tested for it. I was pregnant for the first time six years ago and was tested for iron as part of all the standard blood tests. Back then my ferritin was 11. It was low again the second time I was pregnant and I've been on supplements ever since but it is routinely low – the highest I ever got it through supplementation and diet was in the 30's. Last year I was tested for it again and it was 17. I've been taking a pretty heavy duty iron supplement regularly and it's still only at 28.

I asked my doctor if iron deficiency can cause my burning/tingling sensations and she said it's possible but she's not entirely sure. She wants me to get some iron infusions (IV iron) and see if that helps. Any thoughts on the low iron/neuropathy connection?

Thank you again for your advice.

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@emcg I do not know of any connection, but I do know someone years ago who had very low iron. He went to Mayo and nothing worked to get his iron up. Then a neighbor said try blackstrap molasses. He took a tablespoon a day mixed in water and it worked. Just thought I would mention that for whatever you want to do with it. Might work.

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@emcg

Hello again all –

Thank you @johnbishop @jeffrapp @rwinney @ethanmcconkey so much for all your replies. In answer to your questions, no, I haven't been given any specific diagnosis. The first neurologist I saw said post-viral neuropathy (but there was no specific virus I had been sick with). The second neurologist I saw said neuropathy of unknown origin. I'm not taking any medications.

Last week I got all my blood test results and overall they were good. Liver/kidney function tests = normal. Full blood count, normal. Vitamin D = 60. Vitamin B12 = 605, Folate = 28, Thyroid function tests = normal. The only result that didn't come back in normal ranges is my iron studies.

My ferritin is low at 28 which is what I wanted to ask all of you about. I've had iron deficiency for last least six years although it could have been low before then but I'd never been tested for it. I was pregnant for the first time six years ago and was tested for iron as part of all the standard blood tests. Back then my ferritin was 11. It was low again the second time I was pregnant and I've been on supplements ever since but it is routinely low – the highest I ever got it through supplementation and diet was in the 30's. Last year I was tested for it again and it was 17. I've been taking a pretty heavy duty iron supplement regularly and it's still only at 28.

I asked my doctor if iron deficiency can cause my burning/tingling sensations and she said it's possible but she's not entirely sure. She wants me to get some iron infusions (IV iron) and see if that helps. Any thoughts on the low iron/neuropathy connection?

Thank you again for your advice.

Jump to this post

Hello

I am not personally aware if that connection but perhaps this link may shed some light.

Although rare as an underlying cause of neuropathy or Small Fiber Neuropathy, genetic testing can also be done to rule out a genetic disposition. Celiac and of course Diabetes can be causes as well.

Good luck and keep searching.

Rachel
https://www.ncbi.nlm.nih.gov/m/pubmed/12200980/

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@emcg

Hello again all –

Thank you @johnbishop @jeffrapp @rwinney @ethanmcconkey so much for all your replies. In answer to your questions, no, I haven't been given any specific diagnosis. The first neurologist I saw said post-viral neuropathy (but there was no specific virus I had been sick with). The second neurologist I saw said neuropathy of unknown origin. I'm not taking any medications.

Last week I got all my blood test results and overall they were good. Liver/kidney function tests = normal. Full blood count, normal. Vitamin D = 60. Vitamin B12 = 605, Folate = 28, Thyroid function tests = normal. The only result that didn't come back in normal ranges is my iron studies.

My ferritin is low at 28 which is what I wanted to ask all of you about. I've had iron deficiency for last least six years although it could have been low before then but I'd never been tested for it. I was pregnant for the first time six years ago and was tested for iron as part of all the standard blood tests. Back then my ferritin was 11. It was low again the second time I was pregnant and I've been on supplements ever since but it is routinely low – the highest I ever got it through supplementation and diet was in the 30's. Last year I was tested for it again and it was 17. I've been taking a pretty heavy duty iron supplement regularly and it's still only at 28.

I asked my doctor if iron deficiency can cause my burning/tingling sensations and she said it's possible but she's not entirely sure. She wants me to get some iron infusions (IV iron) and see if that helps. Any thoughts on the low iron/neuropathy connection?

Thank you again for your advice.

Jump to this post

Hello @emcg, You mentioned that you have had iron deficiency for the past six years. Has your doctor expressed any concerns about diagnosing the cause of the iron deficiency or if it' serious? I have no medical training or background but it could be an indicator of another health issue. There is another discussion you may want to join and meet other members discussing anemia.

> Groups > Blood Cancers & Disorders > Anemia
https://connect.mayoclinic.org/discussion/anemia-1/

There is also a podcast you might find helpful on the topic – Women’s Wellness: Iron deficiency:
https://newsnetwork.mayoclinic.org/discussion/womens-wellness-iron-deficiency/

@hopeful33250 may have some thoughts or suggestions for you.

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@johnbishop

Hello @emcg, You mentioned that you have had iron deficiency for the past six years. Has your doctor expressed any concerns about diagnosing the cause of the iron deficiency or if it' serious? I have no medical training or background but it could be an indicator of another health issue. There is another discussion you may want to join and meet other members discussing anemia.

> Groups > Blood Cancers & Disorders > Anemia
https://connect.mayoclinic.org/discussion/anemia-1/

There is also a podcast you might find helpful on the topic – Women’s Wellness: Iron deficiency:
https://newsnetwork.mayoclinic.org/discussion/womens-wellness-iron-deficiency/

@hopeful33250 may have some thoughts or suggestions for you.

Jump to this post

Hello @emcg, I'm glad that John, @johnbishop, invited me to this conversation. I have a friend who was anemic and was iron deficient. As it turned out, she had celiac disease and now avoids gluten and is doing quite well. I believe she was tested by doing an upper endoscopy.

Here is some information regarding anemia and celiac disease, https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220

Have you been tested for celiac disease?

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