Vitamin B12 and Neuropathy

I will look up the Foundation. I am very discouraged today because i tried to go Christmas shopping. I found items I wanted to buy and had them in my carriage but it was impossibly painful to stand in line so I had to leave them in the carriage and go home with nothing.

Yes. The pain is too much. Beyond the threshold. One can only accomidate oneself to the situation and hope no one hears ones screams during the night.

I usually don’t like to have a conversation about dealing with someone else’s pain but believe me I do understand your situation. I was diagnosed with Central Sensitization Syndrome a few years ago. Since a lot of people don’t really know about this diagnosis and that includes doctors, I will give you a general idea it. I use the term general because there are many reasons an varying degrees of how it affects people. To simplify it, it is an exaggeration that takes place in your central nervous system. In regards to pain, your brain starts thinking that your excruciating pain and your reaction to it is now a normal thing. So say if you bump your knee or stick yourself with a needle, the pain you feel is way beyond the actual happening. Doctors refer to it as a wind up. Once this happens and since I am living with this and all the reach I have done on this subject, it will never go away. There are no treatments that work or cures right now. This is a real medical problem not something in your head. Doctors are aware of this medical condition and it seems rare. I don’t think it is all that rare. Since I am not a doctor , I don’t expect or want you to take my word for it. Look it up yourself. People who suffer like you from long term chronic pain can have this happen to them. There is a genetic predisposition from what I have read that is part of why this can take place. Yes I have pain all the time and then I have excruciating pain quite often. Screaming and ending my life is what happens to. There is no pain scale I have been told by neurologist that can accurately measure this. I am being told that I have an even rarer form of Central Sensitization. This has affected all my senses. I have become chemically sensitive to. I can no longer use any pharmaceutical meds or even natural pain relievers. I can only eat certain foods. Sucking it up is not an option for me but a necessity. For me to advise you on how to deal with your pain would be ridiculous. What I would suggest is find a real doctor who will spend his time trying to help. I have found some relief with the neurologist I go to. I use injections of a steroid. That doesn’t help everyone but it helps me.

We should also consume at least 2 tablespoons of fat each day (any kind, the healthier ones are best of course). It replenishes the oily myelin sheathing around the nerves. I don't know if there is any way to measure the myelin sheathing. This advice came from my nutritionist. Peggy

@trishj46, I think the issue is your verizon.net email address. Verizon.net got out of the email business Dec 2017 and migrated all of their email services to Yahoo email. I'm pretty sure you are not receiving the Connect email notifications because they are being blocked by your spam filter.

I'm guessing that Verizon is your Internet service provider. If this is the case, I would stop by one of their stores and see if you can get a service rep to help you check your spam filters to see if your connect emails are being blocked.

You mentioned having a Chromebook so you should be able to make a shortcut on your desktop so that you can easily get to Connect. Here's how to do it.

1. Go to Connect: https://connect.mayoclinic.org/
2. Click the 3 vertical dots at the upper right corner of the Google Chrome web browser screen.
3. Select More tools...
4. Select Create shortcut
5. Type Connect in the box (currently will be showing the name of the discussion) or leave the default discussion name.
6. Check the Open as window box - this will make a shortcut on your main desktop screen that you can click on to go to the Connect website.

If you are still not able to figure it out, please use the following form to contact our director @colleenyoung
-- https://connect.mayoclinic.org/contact-a-community-moderator/

I'm also sending this as a private message so that hopefully you will receive one of them.

@johnbishop A recent blood test put my B12 around 400, right in the center of the normal level. Is that ok?

Jim

@johnbishop A recent blood test put my B12 around 400, right in the center of the normal level. Is that ok?

Jim

@jimhd I think a level of 400 is fine. When I went to my neurologist a few weeks ago, she said my B12 is way too low, and repeated the blood test again. My B12 is at about 200. It was even lower the first time. She said that with someone with neuropathy, it should be at least at 400. Had my B12 problem been caught 2 years ago, when I did the first B12 blood work, I may have been really helped with B12 injections. I am taking them now, but who knows if they will help. Several of my doctors saw my low B12 and did nothing. In summary, the neurologist is aiming for my level to be at least at 400, so I think you are ok. Lori Renee

I usually don’t like to have a conversation about dealing with someone else’s pain but believe me I do understand your situation. I was diagnosed with Central Sensitization Syndrome a few years ago. Since a lot of people don’t really know about this diagnosis and that includes doctors, I will give you a general idea it. I use the term general because there are many reasons an varying degrees of how it affects people. To simplify it, it is an exaggeration that takes place in your central nervous system. In regards to pain, your brain starts thinking that your excruciating pain and your reaction to it is now a normal thing. So say if you bump your knee or stick yourself with a needle, the pain you feel is way beyond the actual happening. Doctors refer to it as a wind up. Once this happens and since I am living with this and all the reach I have done on this subject, it will never go away. There are no treatments that work or cures right now. This is a real medical problem not something in your head. Doctors are aware of this medical condition and it seems rare. I don’t think it is all that rare. Since I am not a doctor , I don’t expect or want you to take my word for it. Look it up yourself. People who suffer like you from long term chronic pain can have this happen to them. There is a genetic predisposition from what I have read that is part of why this can take place. Yes I have pain all the time and then I have excruciating pain quite often. Screaming and ending my life is what happens to. There is no pain scale I have been told by neurologist that can accurately measure this. I am being told that I have an even rarer form of Central Sensitization. This has affected all my senses. I have become chemically sensitive to. I can no longer use any pharmaceutical meds or even natural pain relievers. I can only eat certain foods. Sucking it up is not an option for me but a necessity. For me to advise you on how to deal with your pain would be ridiculous. What I would suggest is find a real doctor who will spend his time trying to help. I have found some relief with the neurologist I go to. I use injections of a steroid. That doesn’t help everyone but it helps me.