Neuropathy and other strange symptoms

Posted by jola65 @jola65, Jun 15, 2019

I’m going to mayo in a few weeks, but I thoughtI’m I would write about my symptoms here to see if anyone has experienced something similar. I have burning and tingling in my arms and legs. It feels like there is an electric shock running through my body at all times. This has been going on for almost 10 years now, and when it began I also developed vertigo and I’m unsure if that has any relation. I have various food sensitivities, trouble sleeping, brain fog, constipation, and tinnitus. These symptoms all started together, and I’m not sure if they’re all related but it seems as though they are. The pain is nonstop, although it has lessened and worsened on and off over time. If anyone has any similar symptoms or any advice please advise!! Thank you for reading.

@jola65

Good luck to you to Jola

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Good luck to you to.

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@lisalucier

Hi, @jola65 – glad you connected with @jenniferhunter and @butterflylan17 about the burning and tingling in your arms and legs and the feeling of an electric shock running through your body at all times. @johnbishop @artscaping also may have some thoughts for you as you look for some answers.

@butterflylan17 – have you found anything that alleviates the hand tingling when you wake up or the burning throughout your body, even for a little while?

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Hi @lisalucier , I have the pain everyday, but some days it's more intense. I'm on lyrica, tramadol, effector, Clonazepam, vitamin D3 and synthroid. The toughest part is the extreme fatigue when I wake in the middle of the night several times.

Tomorrow I have a bone scan at mayo in eau claire (6 year breast cancer survivor) and on June 28th I see much neurologist to discuss these new symptoms. But additionally I have severe iron in my brain and tested positive for a rare hematomachrosis gene mutation on both my mom and dads side. I'm not sure if this brain iron has something to do with it also? Do u know of a hematologist that I can reach out to thru mayo connect? Thanks!
And best wishes to everyone!

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Hello. How are you? It is very nice to meet you all.
I had a Dengue fever five years ago. It left me with a moderated variant of Guillain-Barré. Doctors did not realize of that in that moment and the time passed. Now I have a Poly-Radiculo-Neuropathy. A condition that give me crisis of acute pain since my coxis to my lumbar, dorsal, cervical spine connecting with my head, face teeth, shoulders, chest, ribs, arms, and hands. I have pain all the time. I cannot sleep. Doctors prescribed first Gabapentine and then Carbamazepine. This last pill helps a little but my nights are infernal. I cannot be setting for much time, or resting in bed, or stay on foot. I cannot sustain a heavy book in my hands because of the pain. Of course I haven’t talck about the lost of ‎muscle strength, but PAIN is what don´t left me never.
I was an Early Music student. I was learning to play Early Harps. This, to write on the keyboard is very painful.
I am searching another medicine for neurological pain. It cannot contain Opium derivates, cause I am allergic.
I will thank your advices.
Vradi

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@vradifegari

Hello. How are you? It is very nice to meet you all.
I had a Dengue fever five years ago. It left me with a moderated variant of Guillain-Barré. Doctors did not realize of that in that moment and the time passed. Now I have a Poly-Radiculo-Neuropathy. A condition that give me crisis of acute pain since my coxis to my lumbar, dorsal, cervical spine connecting with my head, face teeth, shoulders, chest, ribs, arms, and hands. I have pain all the time. I cannot sleep. Doctors prescribed first Gabapentine and then Carbamazepine. This last pill helps a little but my nights are infernal. I cannot be setting for much time, or resting in bed, or stay on foot. I cannot sustain a heavy book in my hands because of the pain. Of course I haven’t talck about the lost of ‎muscle strength, but PAIN is what don´t left me never.
I was an Early Music student. I was learning to play Early Harps. This, to write on the keyboard is very painful.
I am searching another medicine for neurological pain. It cannot contain Opium derivates, cause I am allergic.
I will thank your advices.
Vradi

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Hello @vradifegari — I would like to add my welcome to Connect along with @gingerw and other members. I noticed that you also posted in the Chronic Pain members – Welcome… discussion in the Chronic Pain group. You mentioned you now have polyradiculoneuropathy and are looking for other treatments and suggestions. There is another discussion on Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) that I think you would find helpful here:

> Groups > Neuropathy > Anyone been diagnosed with CIDP? It's very rare
https://connect.mayoclinic.org/discussion/has-anyone-on-this-feed-been-diagnosed-with-cidp-its-very-rare/

There is also another site you might find helpful. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Information Page
What research is being done?
https://www.ninds.nih.gov/Disorders/All-Disorders/Chronic-Inflammatory-Demyelinating-Polyneuropathy-CIDP-Information-Page

I would also like to repeat Ginger's @gingerw question – Can you share with us what things you have tried beyond the two medications you mentioned?

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Hi. I have experienced all but tinnitus. We have approached the issues currently by addressing them as anxiety ridden symptoms ( unless you have diabetes)… … we started all these changes as good health and diet practices to clear all systems…. digestive, neuro muscular and finally the nervous system.
A neurologist has me on supplement B-12 and Alpha Lipoic acid for neuropathy and all the tinkling. I am 64. my body fat and diet is primarily mediterranean lo fat and ABSOLUTELY 5 fruits and GREEN vegetables each and EVERY day.
I had your scary symptoms along with headaches for 10 years. Try healthy life practices one at a time. I mean it. Walk at least 1 mile per day without distraction. In the winter, walk in your hallways, at a mall or on a track. I do quick inhale thru nostril
After 1 month, see which symptoms disappear.
I also have a CPAP machine after a sleep study … CPAP stands for Continuous Positive Airway Pressure … you may have apnea which is not allowing you to get proper rest due to poor breathing when you are asleep.
Best wishes.

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@lovee

Hi. I have experienced all but tinnitus. We have approached the issues currently by addressing them as anxiety ridden symptoms ( unless you have diabetes)… … we started all these changes as good health and diet practices to clear all systems…. digestive, neuro muscular and finally the nervous system.
A neurologist has me on supplement B-12 and Alpha Lipoic acid for neuropathy and all the tinkling. I am 64. my body fat and diet is primarily mediterranean lo fat and ABSOLUTELY 5 fruits and GREEN vegetables each and EVERY day.
I had your scary symptoms along with headaches for 10 years. Try healthy life practices one at a time. I mean it. Walk at least 1 mile per day without distraction. In the winter, walk in your hallways, at a mall or on a track. I do quick inhale thru nostril
After 1 month, see which symptoms disappear.
I also have a CPAP machine after a sleep study … CPAP stands for Continuous Positive Airway Pressure … you may have apnea which is not allowing you to get proper rest due to poor breathing when you are asleep.
Best wishes.

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Hi @lovee, Welcome to Connect. Thank you for sharing what helps you. I have idiopathic small fiber peripheral neuropathy. Are you able to share if you have been diagnosed with a specific form of neuropathy?

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Hi, I had a doctor visit on Tuesday he didn’t tell me much, except it is very hard to find what is the cause for my symptoms, but we can start with tests and work from there. When I know more about it I will let everyone know if they find anything, One thing that I saw on one of the tests results that I have carpal tunnel in both of my wrists and elbows going up to my shoulders. Sweat test for small fiber neuropathy came negative. I have a couple more tests that I don’t know the results yet when I do I will let everyone know the outcome.
Best of luck to all.

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@johnbishop

Hello @jola65, I have small fiber peripheral neuropathy with only the numbness. I can't imagine how bad it would feel to have an electric shock running through the body at all times. I'm sorry that I'm not able to offer any suggestions. I did find something that seems like it might be close to what you are experiencing.

Lhermitte's Sign: The Current Status
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4445188/

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Hi John l haven't spoke to you in awhile.. I had to have my eeg test for a week. The neurologist was surprised l didn't have a seizure. Praise God but instead went into tachycardia twice and my new cardiologist they had to call. Next thing l see is 3 nurses a crash cart and my cardiologist. And l started praying. He told me l am going to have to stop your heart. And l said Oh no Jesus not now. So he began to tell what to expect and then what could happen. Well that when l was praying more. Then he was flawed when he saw my heart rate go back to normal. Because he was ready to stop my heart. And l was just Thanking God. It happened the next day so he said l have to do something. I can't let you go home. So l had emergency heart ablation surgery. So when l left the hospital he couldn't wait to see me because it was done at another hospital. And he told me the surgeon is number 1 doing surgeries but not dictation. So l didn't know what kind of ablation surgery he did until l saw him last week. But l have also had numbness, tingling and it feels like a electrical shock on my right side. And numbness left foot but it's the nervous system. So l don't know what they do for it but l probably need to go on a cruise. But there are some supplements l need to get a refill and maybe when l get back on that it will be better. But l just enjoying my life and giving God all the Praise. And see people who God has done miracles in there lives after we are Praying for them. One got a liver transplant, and people who are getting doctors that are helping them. And meds that are in question of causing dementia. And my adopted daughter has a rare blood disease but l was able to tell her about a person who else has it. So we go through ups and downs but if we know who is in control we never stay down long at all. Everyone goes through something sometimes we have more trials in a day that it may seem unbearable but if we know who to put our FAITH in it gets easier everytime one comes. You are the greatest. Have a good evening and Blessing to All. We can Make It!!!

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@techi

Hi John l haven't spoke to you in awhile.. I had to have my eeg test for a week. The neurologist was surprised l didn't have a seizure. Praise God but instead went into tachycardia twice and my new cardiologist they had to call. Next thing l see is 3 nurses a crash cart and my cardiologist. And l started praying. He told me l am going to have to stop your heart. And l said Oh no Jesus not now. So he began to tell what to expect and then what could happen. Well that when l was praying more. Then he was flawed when he saw my heart rate go back to normal. Because he was ready to stop my heart. And l was just Thanking God. It happened the next day so he said l have to do something. I can't let you go home. So l had emergency heart ablation surgery. So when l left the hospital he couldn't wait to see me because it was done at another hospital. And he told me the surgeon is number 1 doing surgeries but not dictation. So l didn't know what kind of ablation surgery he did until l saw him last week. But l have also had numbness, tingling and it feels like a electrical shock on my right side. And numbness left foot but it's the nervous system. So l don't know what they do for it but l probably need to go on a cruise. But there are some supplements l need to get a refill and maybe when l get back on that it will be better. But l just enjoying my life and giving God all the Praise. And see people who God has done miracles in there lives after we are Praying for them. One got a liver transplant, and people who are getting doctors that are helping them. And meds that are in question of causing dementia. And my adopted daughter has a rare blood disease but l was able to tell her about a person who else has it. So we go through ups and downs but if we know who is in control we never stay down long at all. Everyone goes through something sometimes we have more trials in a day that it may seem unbearable but if we know who to put our FAITH in it gets easier everytime one comes. You are the greatest. Have a good evening and Blessing to All. We can Make It!!!

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Hi Lisa @techi, You have certainly had more of life's trials than anyone needs. I'm glad to hear that a specialist was there and the emergency heart ablation surgery was a success. Blessings on your weekend – hoping all goes well for you.

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@johnbishop

Hi @lovee, Welcome to Connect. Thank you for sharing what helps you. I have idiopathic small fiber peripheral neuropathy. Are you able to share if you have been diagnosed with a specific form of neuropathy?

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Hello my fallow up apt is today at 10 what I know from my account it is Peripheral Neuropathy
Any suggestions what to ask at the apt can I suggest that I want spinal tap and mri of cervical mri
There is so many thing that could be wrong
Any ideas of the tests that that can due
Thank you and advance appreciate an advice

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Congratulations, Jola. I think they will tell you what you need, and don´t think you need to worry too much about what to ask unless you look up peripheral neuropathy beforehand and become very familiar with terms and whatever it is that they see as RISKS as well as Pros and Cons. Spinal taps are not risk-free, but each case is different. If you have had an MRi in the last two years, make sure to bring it. Don´t worry too much, just LEARN all you can. Of course the appt. is already today, so may be too late for these comments of mine.

Should let you know that I just got an appointment for August but had to call several times to find out if they got all my records, etc. One must definitely persevere and advocate for oneself. Considering I requested appointment June 5, this is not bad at all. I had been warned it could take TWO YEARS to get an appointment. One can always speed things up a little by calling and being nice at all calls. They are also very nice when you call them to find out. Sounds like you will be going to Neurology, like I will. Good luck today and let us know how it goes. Remember to make notes of everything said, asked and explained. Note-taking is critical. Best of all today!, Joan

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@jola65

Hello my fallow up apt is today at 10 what I know from my account it is Peripheral Neuropathy
Any suggestions what to ask at the apt can I suggest that I want spinal tap and mri of cervical mri
There is so many thing that could be wrong
Any ideas of the tests that that can due
Thank you and advance appreciate an advice

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@jola65, I saw an earlier post on questions to ask when seeing a new specialist that may be helpful. There are some good tips on seeing a new specialist or doctor by @roch here:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

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