People with non diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Liked by Dee

@marinelastef

Hello again John. How are you tested for sleep apnea ? Do you have to be hospitalized for it ? And what did you do to improve it ? I feel like I have an obstruction on my left side after the nerve blocks . Thank you !!

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Hi @marinelastef, I had two different tests. The first one I had was the at home overnight study and the second one I had to stay overnight at Mayo Clinic – which could also be done at a hospital, etc. The second test was more thorough with more probes hooked to you to measure your breathing, heart, leg movement and more. Really interesting test and revealed a lot more than the simple home test.

Mayo Clinic Patient Video – Home Overnight Oximetry
https://www.mayoclinic.org/patient-education-videos/overnight-oximetry

Obstructive Sleep Apnea – Diagnosis and Treatment
https://www.mayoclinic.org/diseases-conditions/obstructive-sleep-apnea/diagnosis-treatment/drc-20352095

The treatment if you have obstructive sleep apnea is usually a CPAP machine to help with the breathing. I've been using one for 7 days now and I'm still getting used to it but I think it's helping.

I would talk to your doctor and discuss the possibility of having sleep apnea. If you do have it, the great news is that it is treatable.

Would love to hear back if you are tested and what the outcome is.

Thank you!

John

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@marinelastef

Hello again John. How are you tested for sleep apnea ? Do you have to be hospitalized for it ? And what did you do to improve it ? I feel like I have an obstruction on my left side after the nerve blocks . Thank you !!

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Hello John !!

First of all I have to tell you what a wonderful human being you are. I’ve seen you responding and spreading the knowledge you have with all of us .

I will definitely ask my doctor if I can be tested for sleep apnea. I do have many issues with it, ether waking up breathless or numb or completely drenched with sweet. Hopefully that can help with longer and more restful nights .

Thank you so much again for the info !!

Best wishes !!

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In reply to @marinelastef "Me too !!" + (show)
@marinelastef

I’m interested in any supplements and techniques or medications to alleviate the neurophatic pain. So far nothing works for me either. But we must fight to be heard by someone and let doctors know what we go through and how desabilitating this condition is !!

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@marinelastef

Hello again John. How are you tested for sleep apnea ? Do you have to be hospitalized for it ? And what did you do to improve it ? I feel like I have an obstruction on my left side after the nerve blocks . Thank you !!

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Thank you for the kind words @marinelastef ! Hoping you find some answers for longer and more restful nights.
John

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In reply to @marinelastef "Me too !!" + (show)
@marinelastef

Hi @marinelastef, I found the supplements that I take in a closed Facebook group. This is the website for Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://solutions2pnpd.com/. I did my own research before joining the group which is what I think everyone should do. Although it works for me, it may not work for everyone as all of us are a little different. Rather than repeat my story here is the link where I posted how it's helped me.
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=45#comment-65985

John

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In reply to @marinelastef "Me too !!" + (show)
@marinelastef

John, thank you a million. I will definitely go and look for that protocol and supplements you mentioned although I take some things for neurophaty already, still no improvement felt from them yet.
Wishing you a good health and good night !!

Thank you !!!

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In reply to @marinelastef "Me too !!" + (show)
@marinelastef

It looks like I already join that group! :)) They inspired me regarding the supplements, except that I had to cut down the dosage !!
Thank you John !!

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Can you identify the latest posts?

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@donnelson

Can you identify the latest posts?

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Hi @donnelson, it can be a challenge to find the latest posts. You’ll see in this discussion that the last post was made 1 day ago just above yours. Starting next week, Connect will be updated so that the posts will be presented in chronological order and you’ll be able to choose to see the newest posts first or at the end. In other words seeing the posts in order from newest to oldest or from oldest to newest will be your choice.

In the meantime, is there something that I can help you find?

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Yes I would like to find people nondiabetic neuropathy

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I would too. Should we start a separate group?

Liked by barbarakay

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I have non
diabetic and non Chemo Neuropathy .Likewise my Father, mybrother and his son. Condition extends through feet up past my knees. Also in right hand. Starting about 6 years ago and continues to progress. I have very little pain so far. I take a wide variety of Shaklee Food Supplements .No medications .

Liked by marystefy

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@articmark, @user_ch98d0b5c and others, there already is an active group discussion here that you might want to consider if you have not already seen it.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

John

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@materk

I have non
diabetic and non Chemo Neuropathy .Likewise my Father, mybrother and his son. Condition extends through feet up past my knees. Also in right hand. Starting about 6 years ago and continues to progress. I have very little pain so far. I take a wide variety of Shaklee Food Supplements .No medications .

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It turns out that I have had non diabetic and non-chemo progressive neuropathic issues since I was 10. At that age I discovered that I could walk on snow and it wasn't cold. Then at 16 my entire back started hurting both bones and muscles. I have a bad back but the doctors could never figure out why it hurt so much. Then excessive sweating above my waist when I exercised. This progressed so in the last year any exercise or hot and humid and I sweat like crazy above the waist and nothing below the waist. 5 years ago my right foot started togo painfully numb. A year later my left went too. The pain moved up my leg to my knees.

Then in November 2016 a tooth in my right lower jaw started going numb while my right ear started buzzing. Testing at the time determined that there was nothing wrong with my teeth and both ears showed perfect hearing. 8 months later, I have lost 60% of the hearing for low tones in my right ear. Old age hearing affects the high tones and all hearing aids work for high tones.

A year or so ago my hands and wrists started being painfully numb and tingly. About the same time my face and head became tingly, itchy, and painful.

I'm on just about every drug that is supposed to help neuropathic pain. Going to start a trail of IVIG next week.

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@materk

I have non
diabetic and non Chemo Neuropathy .Likewise my Father, mybrother and his son. Condition extends through feet up past my knees. Also in right hand. Starting about 6 years ago and continues to progress. I have very little pain so far. I take a wide variety of Shaklee Food Supplements .No medications .

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How were you diagnosed?

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