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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

grandmaR | @grandmar | Jun 8, 2019
In reply to @almighty "9 weeks ago I had my hB1ac levels come in at 74, this was up from..." + (show)
@almighty

9 weeks ago I had my hB1ac levels come in at 74, this was up from previous from 44. I immediately started a low Kcal diet of 800 Kcals a day with 4 litres of water. 8 weeks later I was tested again. My new level was 45, I was taken off all medication officially by the diabetic nurse. (I had already stopped taking them 4 weeks earlier)
9 weeks and 3 days after the first test I have lost 48 lbs and have more energy than ever. I still have the damaged nerves in my feet but none of the inflammation that caused it and the pain I was getting every evening. I can sleep uninterrupted.

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@almighty
Congratulations!
You have great determination and willpower.
Wish I did!!!!!
What is hB1ac?
I know A1C, but not that.
Keep up the good work!!!

Ronnie (GRANDMAr)

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qball2019 | @qball2019 | Jun 9, 2019
In reply to @patrick17 "@age73 Regarding the EMG, try to research the doctor who will perform your EMG. I had..." + (show)
@patrick17

@age73 Regarding the EMG, try to research the doctor who will perform your EMG. I had an EMG performed by a well-respected neurologist and he had me jumping off the table with pain. It was so senseless. He said that it was because I was overly sensitive to pain. A month later I had a second more thorough EMG performed by another neurologist and only once did I experience slight discomfort. It was like night and day between the two. I hope you will find a doctor who is skilled at performing EMGs.

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I wish I would have known that you should always research your doctors before scheduling an appt. I was also jumping off the table. When they got down to the couple vertebrae in my lower back it hurt so bad I didn't even let them finish. I couldn't take any more pain! It's torture!

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1 reply
qball2019 | @qball2019 | Jun 9, 2019
In reply to @helennicola "interesting! when I had the 2-part test done I couldn’t wait til it ended it was..." + (show)
@helennicola

interesting! when I had the 2-part test done I couldn’t wait til it ended it was so uncomfortable. It might be compared to having a dentist numb your mouth with s needle, getting blood drawn or having a steroid shot in your foot: it all depends on who’s doing it. The Dr. who performed the EMG test on me had over 20 yrs. experience!

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The pain depends on what kind of EMG you're having and what part of your body it's done on. Not all of them are painful.

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grandmaR | @grandmar | Jun 9, 2019
In reply to @qball2019 "I wish I would have known that you should always research your doctors before scheduling an..." + (show)
@qball2019

I wish I would have known that you should always research your doctors before scheduling an appt. I was also jumping off the table. When they got down to the couple vertebrae in my lower back it hurt so bad I didn't even let them finish. I couldn't take any more pain! It's torture!

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@qball2019
Wow!
What did your doc say and do?
Ronnie (GRANDMAr)

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1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Jun 9, 2019
In reply to @gojuman "so for years I've had some numbness in my toes and GP told me it was..." + (show)
@gojuman

so for years I've had some numbness in my toes and GP told me it was neuropathy. Also my left knee had surgery on it many years ago. I also often have low back pain. If I sit for a long time my leg often goes to "sleep" but I can move it around and I'm back to feeling. Also if I put my left foot on a stool and let that left leg be there a while with no support under it other than the foot it gets very stiff and soar. So anyway I was picking up my daughter in Texas (flew down driving back), all was normal went down to lobby to get breakfast can back to room and propped my leg up to do some computer work. When I stood up my leg was asleep............but it wont wake up! Today is day 5. I was concerned while driving back from Texas to Ohio so stopped into emergency room to ensure it wasn't heart attack or stroke or something that I should not be traveling with. They sorta think pinched nerve and gave me some predisone and a muscle relaxer. Can neuropathy just suddenly take over a whole limb like this? Butt cheek to toe has numbness.........scared to death I wont be walking at all soon

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@gojuman You might have a nerve entrapment caused by a misalignment of your pelvis, or by overly tight fascial tissue between the spine, legs and pelvis. A physical therapist trained in mypofascial release can help. Here's a link to the MFR discussion where you can find a lot of information and a provider search. Propping your leg up certainly can cause issues if there was a misalignment to begin with as it will pull on everything. You can work through this, so don't surrender to fear. You have an opportunity to participate in fixing this if this is a physical entrapment problem. I have had my arms go numb and had sciatic pain issues that were resolved with MFR. There is hope, so jump in and advocate for yourself. There is even a video in the discussion showing a relevant treatment of a pelvic issue.

https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
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qball2019 | @qball2019 | Jun 10, 2019
In reply to @grandmar "@qball2019 Wow! What did your doc say and do? Ronnie (GRANDMAr)" + (show)
@grandmar

@qball2019
Wow!
What did your doc say and do?
Ronnie (GRANDMAr)

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@grandmar
Did you mean when I couldn't finish the EMG or when my doctor ditched me?

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1 reply
grandmaR | @grandmar | Jun 10, 2019
In reply to @qball2019 "@grandmar Did you mean when I couldn't finish the EMG or when my doctor ditched me?" + (show)
@qball2019

@grandmar
Did you mean when I couldn't finish the EMG or when my doctor ditched me?

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Both

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1 reply
qball2019 | @qball2019 | Jun 11, 2019
In reply to @grandmar "Both" + (show)
@grandmar

Both

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@grandmar
The doctor just stopped and then said what he did get done was all normal. Normal? I can't even stand up straight. Every time I try it lights up the T10-T12 area and the hot, burning pain travels downward.

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 11, 2019

These articles were in the latest Foundation for Peripheral Neuropathy's e-newsletter and I thought they would be of interest to the members in this discussion.

Coping with Peripheral Neuropathy - June 2019
-- https://www.foundationforpn.org/2019/06/06/coping-with-peripheral-neuropathy/?blm_aid=116106

Neuromodulation for Refractory Neuropathic Pain
-- https://www.foundationforpn.org/2019/06/10/neuromodulation-for-refractory-neuropathic-pain/?blm_aid=116106

Healthy Eating for Peripheral Neuropathy with Chef Bill Nolan
-- https://www.foundationforpn.org/2019/06/10/healthy-eating-for-peripheral-neuropathy-with-chef-bill-nolan/?blm_aid=116106

Studies to explore how myrcene, other cannabinoid-based ingredients can treat chronic-neuropathic pain
-- https://leaderpost.com/cannabis-health/studies-to-explore-how-myrcene-other-cannabinoid-based-ingredients-can-treat-chronic-neuropathic-pain/

Out-of-pocket costs for neurologic Cost of Meds medications rise sharply over 12 years
-- https://medicalxpress.com/news/2019-05-out-of-pocket-neurologic-medications-sharply-years.html

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confused1955 | @confused1955 | Jun 11, 2019

I think I'm in here somewhere but my diagnosis has changed and I don't know if I'm in the right group. I finally received a second opinion and unfortunately it's worse. I have Complex Regional Pain Syndrome CRPS. Nicknamed the suicide disease as the on the long scale it's 42 out of 50. I have read reports that attempts and success range at almost 70%. So far no favorable prognosis. Same deal Gabapentin and pain killers. I've been promised I would be kept comfortable but no one knows how to do that. I live 24 7 in my dark room because the light affects my head. Is there anyone in this group that has had this disease for over 2 years as I believe we would have more in common. After 2 years your not eligible for testing anymore because after 2 years there is no chance of a cure. You are too alive to be helped by dying with Dignity because I suffer with my hands 24 7 it feels like they are in boiling oil. Because I'm not eligible I have to suffer forever. When your reading and they say rarely children get this but they do and it's vicious on our little warriors. HELP

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