Living with Neuropathy - Welcome to the group

@beckiw814 I suspect that most human beings older than 50 or 60 have degenerative disc disease and arthritis. I have DDD, and the entire length of my spine is very arthritic. I've had two shoulders replaced due to arthritis, etc, etc. I seriously doubt that either DDD or arthritis is connected to neuropathy.

@cyme I’m so sorry you are going through such a rough time.

I hope that you get some relief soon.

I feel like one of the post directed at me was belittling my diagnosis that I currently have. Is this site only for those with more severe problems than DDD & & RA in multiple levels of the neck?

Thanks,
Becki

@johnbishop So strangely the pins and needles and electric shocks have gotten better since acupuncture and really upping my vitamin B12. I still have some tightness in my left elbow and left knee. I am still struggling to eat and have an impact there and also with my colon. Testing revealed not much going on inside, so gastro-emptying test to see if I have gastroparesis, which is also neurological. My new ENDO said extremity neuropathy is not diabetic in nature in his opinion (he ran tests and I passed all sensitivity), which is weird. Again, I was vitamin B12 deficient for some time and don't know if all of my health problems are back to that, or if there is something else going on. Acupuncture has made it so I can actually sleep some and not wake up with dead hands or have shooting pain in my hands. I was healthy in April and then everything went to heck. Although I just wanted to recommend acupuncture and ensuring you are testing for vitamin b12 and vitamin d deficiency; I have been dealing with both and a doctor that was not testing me after I tested low. I have a long road ahead of me I think, but there are moments I feel better, which is hopeful. Ironically, they took me off all diabetes meds, saying I have it managed. A bit weird.

Hi nikkig @nikkig,
I read your post and I noticed that your question is rotating around many reasons, the reason of ( was vitamin B12 deficient for some time and don't know if all of my health problems are back to that), the (or if there is something else going on), and the doctor ( a doctor that was not testing me after I tested low). My suggestions here is from my humble experience working in many hospitals here in USA. I believe all those previous reasons would play equally in the tightness, inability to sleep well, and the pain. Sometimes the diet that doctor recommend gives adverse effect, especially if taken with B12 vitamin (extra boost for heart health because of high level of the vitamin B12 coming from many resources pouring in the blood stream. Dairy products,eggs, and fortified cereals also play big in leading for extra B12. Unbalance meal that include too many meat also have adverse effect on the health of the heart. Extra or low proportions of the vitamin and bad cholesterol (LDL) can sitting there in the body and watching when the person going to ring the bell for the opportunity to appear. And can be a result of the daily stress for some elderly .
I hope you getting well soon!

Becki @beckiw814 - To answer your question, this site is all about learning from each other, patient to patient. It doesn't matter whether it's a more severe problem or a minor aggravation, all people are welcome. No one should be belittled for their diagnosis or explanation of what they think their diagnosis is. I really do not think the person meant it in a belittling way but was trying to provide what they thought was helpful information.

Becki I hope you are able to share an update with us after your appointment.

John

Hi @nikkig -- I take 5,000 mcg lipsomal B12 liquid daily along with other supplements. My mother was a great believer in acupuncture and got relief with it for her RA. I tried it once for my PN but didn't feel that it helped me. That sounds like good news if you are able to manage the diabetes without medications.

You have a great positive outlook. Yes, it's probably a long road for all of us but if we can have a few days where we feel better that certainly helps. Wishing for one of those days today for all our PN cyber friends.

God Bless....
John

Hi Becki. I had wanted to respond sooner, but I have been working some long hours this weekend. First let me say how sorry I am to hear of your mom's passing. The stress of this grief is no doubt making your health worse. I can relate. I had a tough couple of years taking care of my disabled parents while my spine was getting worse and all the while I was searching for a surgeon to help me and none would. I hired caregivers when I could find them, but I always had to trade shifts with them and be there when no one showed. I had to be responsible for everything. My parents were both in wheelchairs and my dad became an invalid and passed away. I was taking care of them at home because my dad didn't want to be in a nursing home, but he couldn't do anything for himself and it was really exhausting for me and I was in a lot of pain with my spine at that time. I had to get a Hoyer lift because I wasn't strong enough to help lift my dad. That would be hard for an able bodied person, let alone me who needed surgery. That last month was hard. I had trouble sleeping knowing that my dad was dying, so I put on music that helped me sleep. I cried myself to sleep every night. I just let the feelings of grief flow and found some peace in that. There was beauty there is the sadness. There was a particular song that was speaking to my feelings, so I would play that and just cry. That's also when I adopted a silly cat who could make me laugh on the hardest days. After my dad passed, I created an hour long video documentary telling the story of his life and that became his memorial service. It was very healing for me to do that and I had some closure. We grieve in our own ways, so give yourself permission to do what you need to do to process the feelings. It was neat to discover pictures I had never seen before of my dad as a kid with his mom.

I also wanted to say that as humans, we tend to think that other people think like us, but that's not always true. Other patients who read your story might think your situation is just like theirs and respond from that viewpoint, and that might sound like they are judging. I think they are just looking for common ground. We are patients and all we can really do is relate what we know from our own experience. No one here can give medical advice, but we all can learn something from each other. If something connects for you with someone here, that's good, but if not, that's OK too. It's up to you what you take from the conversation.

As hard as it was for me during those two years, there was also a gift there. During all the time I spent with my dad, I became closer to him, and I had more time with him. During that time, I was able to talk to my dad and he told me how proud he was of my artistic ability and that was what I was meant to do. My parents had never said that to me before and it gave me validation. They wanted me to pursue a career in medicine. I decided against it, and worked in research instead. I eventually left the lab and went to art school. It was right after my dad's passing and service that I got the call from Mayo to come for a neurosurgery appointment. I think it was just supposed to happen that way, and the compassion of the specialists at Mayo gave me the comfort to go forward with the surgery that I needed. I was also able to advocate for myself as a patient because of my biology training, and that definitely helped me understand medical literature and figure out what the other surgeons were missing. I found that literature because I looked up a term in a paper that my Mayo surgeon had co-authored and I found literature with cases similar to mine. I had an answer and I sent that case study in with my letter to this Mayo surgeon, and he took me as his patient.

Let me know if I can do anything else for you. I saw a counselor too and wrote down a lot of my feelings on paper. This all takes time and you will get through it if you let it happen. It's hard, but somewhere in all of it, you'll find your way again.

@jenniferhunter First of all I am so sorry about your parents passing. I also feel bad for you because your dad put you in an almost impossible position while you were dealing with such pain in your own body.
My mom had been sick for a couple of years but not to the point that my step dad needed my help.
She could still walk, at times with the use of a Cain, bathe and do a little bit, not much around the house.
She went to our local hospital on Tuesday, July 10th because she hadn’t slept at all the night before because of stomach pain. She passed that Friday, the 13th of July from intestinal ischemia.
By time the diagnosis was made it was too late.
Now I think that God took her before I started with this pain. She couldn’t stand what the RA was doing to me. Now with the neuropathy and neck pain I am pretty miserable.
I am hopeful that the neurologist can help me.

Regards,
Becki

Hello, Do any of you have Neuropathy? It's torturously painful, websites describe the early stages, tingling and needle stick pain occasionally but they don't describe the later stages that are intensely painful constantly.