Living with Neuropathy - Welcome to the group

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?

@kimchi19

I'm Crystal and I may have parsonage turner syndrome( diagnosis this week) and a poly neuropathy diagnosis 6 months ago.

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@kimchi19
Hi Crystal and welcome!
I am sorry, but I am not familiar with Parsonage Turner Syndrome.
Would you explain what it is and how it is impacting you?

I know poly usually means "many or multiple".
Does that mean you have neuropathy in multiple areas?
Please tell us how that is impacting you, too.

Have a great evening!
Ronnie (GRANDMAr)

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HI,
I have had a half a dozen emg tests so I know them well. I don't want to say too much because sometimes knowing too much is not good. getting stuck with needles is no fun of course, but the process is manageable. I would just say to you while you are getting it done is to have the mindset that this test may help get you some answers. Hopefully that will keep you going while you endure some discomfort. Good luck to you.

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Hi Crystal and welcome.
I had a EMG test a long time ago. Bit uncomfortable but none thing unbearable. Showed the doctor that I have nerve damage (erb’s palsy).
Sounds a bit similar to what you have. Started off paralyzed now dealing with great weakness and pain. Although hoping for you that yours might go back to normal. The test will show nerves affecting.

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@cocodab

Hi Crystal and welcome.
I had a EMG test a long time ago. Bit uncomfortable but none thing unbearable. Showed the doctor that I have nerve damage (erb’s palsy).
Sounds a bit similar to what you have. Started off paralyzed now dealing with great weakness and pain. Although hoping for you that yours might go back to normal. The test will show nerves affecting.

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If you want ask the neurologist to give you a sedative before the EMG. It helped me some with my second round of them.

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@aeg73

I'm new to this group and not sure how to make an official post/question yet? Due to my symptoms/issues – intermittent short cramp or pinching pain in calves, occasional upper thigh, biceps, wrist and hand, muscle spasms, jaw and neck tenderness, etc. my MD has requested an EMG test. What should I expect from this test, is it painful? If I don't show signs of weakness or muscle loss will an EMG be the appropriate test? I also have Adhesive Capsulitis which is getting better but for some can cause body exhaustion, muscle spasms, etc. I'm on here as I don't have a clear diagnosis, some say/seem like Lyme, fibromyalgia like symptoms but I'm thankful that I'm able to keep moving and hope I don't get dreadful news but I want my body back as it was. Any insight appreciated. – Amy

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@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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@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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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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Regarding the EMG…..
I forgot to mention in my post, that the amount of discomfort (or not), can also depend on how inflamed you are when taking the test.
If you are very inflamed, like I was, I felt EVERYTHING!
If you are no inflamed or very little inflamed, your experience can be very different!
And yes, as mentioned, the 'touch' of the person doing the test will impact you as well.

Ronnie (GRANDMAr)

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Don't mean to sound sexist, but after having been through several EMGs, I found that when women performed the test, it was less painful.

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@amaze02

I’m a type 2 diabetic , I get occasional pain in my legs. Trying to increase my knowledge, for treatment and slowing its progress.

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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

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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Hello @almighty, welcome to Connect. Thank you for posting. That is really great news that you were able to get off of all medication by changing your diet. I'm sure your story may be able to help other members with your symptoms. Are you able to share a little more about your diagnosis and details of your diet?

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@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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@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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@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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@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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@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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