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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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Jun 28, 2019
In reply to @techi "Hi John l haven't spoke to you in awhile.. I had to have my eeg test..." + (show)
@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.

REPLY
jola65 | @jola65 | Jun 28, 2019
In reply to @johnbishop "Hi @lovee, Welcome to Connect. Thank you for sharing what helps you. I have idiopathic small..." + (show)
@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

REPLY
1 reply
joanmahon | @joanmahon | Jun 28, 2019

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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Mentor
John, Volunteer Mentor | @johnbishop | Jun 28, 2019
In reply to @jola65 "Hello my fallow up apt is today at 10 what I know from my account it..." + (show)
@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

Jump to this post

@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

REPLY
Lisa Lucier | @lisalucier | Jul 2, 2019

@jola65 - how did your follow-up appointment go?

@butterflylan17 - how did the results of the bone scan turn out?

REPLY
Vradi Fegariou | @vradifegari | Jul 4, 2019

I can´t write with my hands, neither write on a keyboard. Both are very painful. I don´t understand why in four years of treatment with Carbamazepine, to write be so painful.

Are there another treatment for neorological pain on hands?
Thank´s

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2 replies
Vradi Fegariou | @vradifegari | Jul 4, 2019

In reply to Moderator John, Volunteer Mentor @johnbishop and Lisa Lucier, Connect Moderator, Ginger:
Thank you very much for answer. Gabapentine in the past and Carbamazepine in the actuality. Both medicines along with Vitamine B12, B6 an the orhers. Just that.
I am´reading the articles now.

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 4, 2019
In reply to @vradifegari "I can´t write with my hands, neither write on a keyboard. Both are very painful. I..." + (show)
@vradifegari

I can´t write with my hands, neither write on a keyboard. Both are very painful. I don´t understand why in four years of treatment with Carbamazepine, to write be so painful.

Are there another treatment for neorological pain on hands?
Thank´s

Jump to this post

@vradifegari there are some hand exercises you can do that might help with the neuropathy pain in the hands. Have you ever discussed the possibility of carpal tunnel syndrome in your hands with your doctor?

6 Exercises for Neuropathy in Hands
-- https://nervepainguide.org/hand-neuropathy-exercises/

Mayo Clinic has some information on carpal tunnel syndrome here: https://www.mayoclinic.org/diseases-conditions/carpal-tunnel-syndrome/symptoms-causes/syc-20355603

REPLY
Leonard | @jakedduck1 | Jul 4, 2019
In reply to @vradifegari "I can´t write with my hands, neither write on a keyboard. Both are very painful. I..." + (show)
@vradifegari

I can´t write with my hands, neither write on a keyboard. Both are very painful. I don´t understand why in four years of treatment with Carbamazepine, to write be so painful.

Are there another treatment for neorological pain on hands?
Thank´s

Jump to this post

@vradifegari
I’ve been suffering with Polyneuropathy for 40 years. The only thing that helped a little was when I took Fentanyl but that’s a bit drastic and you probably couldn’t find a doctor to prescribe it. And I tried many of the Seizure drugs, not prescribed for Neuropathy but for Seizures. But none helped my Neuropathy.
Have you tried any other Anticonvulsants? You might try Antidepressants some people have had some luck with them.
Mine started on the bottom of my feet. I got some high quality New Balance shoes that helped some.
Good luck,
Jake

REPLY
Leonard | @jakedduck1 | Jul 4, 2019

@vradifegari
Also you may want to switch to the extended release version of Carbamazepine, lots of seizure patients do better on it. The blood level is more stable. However I’d get off if your not getting any noticeable relief. Neurontin/Gabapentin or
Lyrica/pregabalin which are probably the most frequently prescribed medications for nerve pain May be the most effective.
The following drugs may possibly be effective. Lamictal/Lamotrigine, Phenobarbital, Klonopin/clonazepam, Depakote/valproic acid, Topamax/topiramate (Lots of Epilepsy patients call this Dope-a-max) and Gabitril/tiagabine. Personally I wouldn’t take any of these last ones but who knows what may be effective for you.
Best of luck,
Jake

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