Living with Neuropathy - Welcome to the group

Posted by Colleen Young @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?

@bustrbrwn22

@sunnyflower I have an injection scheduled for the 23rd. I think it will be the first of 3 but it’s so expensive. Please keep us posted on how it goes. Is there anything someone should be worried about with getting these (besides the standard possibility of infection etc)?

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Busterbrwn , I have never experienced any side effects after an injection and don’t know anyone who has; not that it can’t happen; just thought I’d add my 2 cents. Helen

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@johnbishop

Thanks Toni @avmcbellar, I use organic half & half with a little organic heavy cream to make my yogurt. I also bought an inexpensive yogurt maker that makes it really easy to make your own. You are right about the small steps making big strides 🙂

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@johnbushop, I never thought about organic half and half for the yogurt. I am sure it comes out tasty with the cream. I made mine over 15 years ago. Back then I used what I had and made it without a yogurt maker. Does yours make cups of yogurt? Do you buy yogurt culture or grow the bacteria from existing yogurt? I made mine from scratch using a gallon of whole organic milk.

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@johnbushop, I never thought about organic half and half for the yogurt. I am sure it comes out tasty with the cream. I made mine over 15 years ago. Back then I used what I had and made it without a yogurt maker. Does yours make cups of yogurt? Do you buy yogurt culture or grow the bacteria from existing yogurt? I made mine from scratch using a gallon of whole organic milk. This was more than 15 years ago. I did not have a yogurt maker so I used what I had. Living in central Florida provided a warm enough garage to grow bacteria(lol, felt like a microbiology class!). It worked out well, great results! I strained the yogurt just long enough to yield greek yogurt.
John, how did you combat heat intolerance during your exercise routine? I use a small fan for my 10-15 minutes.
Since the last couple of months, the diplopia and neuroplasticity has made it more difficult for me due to the increased motion sickness, but I will get back on track along with watching my carbs. Thank you for the inspiration to achieve weight loss as you have experienced! 🤓Toni

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@bustrbrwn22

@sunnyflower I have an injection scheduled for the 23rd. I think it will be the first of 3 but it’s so expensive. Please keep us posted on how it goes. Is there anything someone should be worried about with getting these (besides the standard possibility of infection etc)?

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Hi @bustrbrwn22 there are side effects when taking steroids in any form i.e. including oral or intra muscular(IM) injections. Please be aware. If the benefits outweigh the risks for you then go for! It all is about what matters to you. Toni

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@avmcbellar

@johnbushop, I never thought about organic half and half for the yogurt. I am sure it comes out tasty with the cream. I made mine over 15 years ago. Back then I used what I had and made it without a yogurt maker. Does yours make cups of yogurt? Do you buy yogurt culture or grow the bacteria from existing yogurt? I made mine from scratch using a gallon of whole organic milk.

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Hi Toni @avmcbellar, The yogurt maker I bought came with 8 six oz jars with snap on lids. I've since purchased 8 more six oz jars with screw on lids so that I can make a new batch when needed. My wife and I usually get 2 servings with each jar and top it with fresh fruit/berries. Also I've messed up a few batches by cooking too long or too high temp where it got a little sour and more like cottage cheese and some liquid separation (whey/protein I think). That's when my wife made some homemade cranberry sauce that probably has too much sugar in it but makes the bad batch palatable and it still has the gut bacteria.

I followed the recipe on @LeeAase's Best Yogurt Ever blog (https://social-media-university-global.org/2020/05/best-yogurt-ever/) which has links to the yogurt maker, the BioGaia tablets, which contain the bacteria, and the inulin powder as a source of prebiotic fiber on which they feed. I didn't watch my first batch and it was the worst because the yogurt maker Lee has wasn't available at the time I bought mine and the one I got I think the temperature control may not be as accurate but I'm not sure. He made his at 104° for 36 hours. When I used those settings mine turned out like cottage cheese and more liquid. I've found mine to work best at 104° for 14-17 hours. Then it turns out thicker like shown in his video. The last batch I made had one jar that was more liquid but the rest have been fairly thick but not quite like Lee's so I'm going to set it for 17 hours and check it each hour starting at 14. It takes 10 of the BioGaia tablets to make the first batch and afterwards you can use a couple of spoons of the yogurt as a starter for the next batch along with some more inulin powder.

What's nice about using a yogurt maker is the automation. I can mix all the ingredients and pour the liquid in the jars in about 10 minutes then all I have to do is pour the liquid in the jars and set the time/temperature. I've seen recipes for InstaPots but then you would have to scoop it out and into jars. With the yogurt maker you just have to take the jars out, wipe them off to get the water off of the outside and stick them in the refrigerator.

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My short fiber neuropathy (severe burning pain in feet, legs, hands, and arms) was caused by a Kenalog cervical steroid injection two years ago. I recommend that you ask if your doctor is using Kenalog because it is toxic to nerves. If the Kenalog is mistakenly injected into the spinal canal, it will attack your nerves. Hope this helps other people avoid my agony.

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@cwallen9

My short fiber neuropathy (severe burning pain in feet, legs, hands, and arms) was caused by a Kenalog cervical steroid injection two years ago. I recommend that you ask if your doctor is using Kenalog because it is toxic to nerves. If the Kenalog is mistakenly injected into the spinal canal, it will attack your nerves. Hope this helps other people avoid my agony.

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cwallen, thanks for sharing that info, You’re the first I’ve heard with a negative reaction from a steroid injection. Good to know. So sorry for your terrible misfortune. We’re you able to sue the doctor responsible or were you made aware of the possibility before hand? I wish you the best going forward. Helen

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@helennicola

cwallen, thanks for sharing that info, You’re the first I’ve heard with a negative reaction from a steroid injection. Good to know. So sorry for your terrible misfortune. We’re you able to sue the doctor responsible or were you made aware of the possibility before hand? I wish you the best going forward. Helen

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Hi @helennicola yes, there are long term side effects. One of which is nerve damage, The side effects @sunnyflower listed are the possible side effects at the time of the injection. Most people don’t think about the long term effects on the body until it is too late. Like I said, it all comes down to what is most important to the patient. Take care. Toni

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I tried talking to lawyers, but none of them would take my case unless a doctor(s) would testify that the injection definitely was the cause of my neuropathy. Of course, no doctor will say that it was definitely the reason, even though I felt the neuropathy start immediately after the injection. They just call it "idiopathic", which is what most of us sufferers have been told. Again, be careful and learn as much as you can.

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@avmcbellar

Hi @helennicola yes, there are long term side effects. One of which is nerve damage, The side effects @sunnyflower listed are the possible side effects at the time of the injection. Most people don’t think about the long term effects on the body until it is too late. Like I said, it all comes down to what is most important to the patient. Take care. Toni

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Hi Avmcbellar, I’ve always been aware of the possible long term side effects of steroids, that is why most doctors will only agree to administer a few over a protracted period. With myself, it was always a last ditch choice after trying everything else. Helen

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@jesfactsmon

Sunny, I do not see a specific rheumatology topic for Connect. But I did find these by searching for rheumatology or joints in the search window:

Here is something for bones joints and muscles:
https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/
This one about rheumatoid arthritis:
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/?pg=12#comment-332812
This one mentions rheumatology but just has 3 posts:
https://connect.mayoclinic.org/discussion/rheumatologicalneurological/?utm_campaign=search
And, if you look at the following web page it does list other (non Mayo Connect) forums if you are interested: https://www.healthline.com/health/rheumatoid-arthritis-forums#Reach-Out

That was as far as I got. Best, Hank

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Thank you Hank!!! I really appreciate your time and effort to find and share these w/ me. Have a blessed day, Sunny

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@cwallen9

I tried talking to lawyers, but none of them would take my case unless a doctor(s) would testify that the injection definitely was the cause of my neuropathy. Of course, no doctor will say that it was definitely the reason, even though I felt the neuropathy start immediately after the injection. They just call it "idiopathic", which is what most of us sufferers have been told. Again, be careful and learn as much as you can.

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Cwallen, doctors do stick together, I had a similar experience years ago with a prosthodontist, I had a lawyer who never mentioned the need for another dentists’ verifying testimony on my end and then the judge summarily dismissed the case when we went to court. So much for paid representation! 🙄

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