Living with Neuropathy - Welcome to the group

Hi @logman1, I would like to add my welcome to Connect along with @amandajro and others. It's good to see that you have gotten your A1C numbers down. That is a great start. From your A1C numbers I was wondering if you may have been told you are prediabetic or possibly have diabetes. The Foundation for Peripheral Neuropathy has some information on both conditions that you might find helpful -- https://www.foundationforpn.org/causes/diabetic-peripheral-neuropathy/.

Has your doctor suggested any physical therapy or exercises to help with your balance and leg strength?

I am new to this group and was very glad to find it. I haven't been able to talk to anyone that has anything remotely resembling what I have.
I do not seem to have any kind of neuropathy that fits the description of what I have read about. I do not have diabetes, and I do not have burning or numbness in my feet or hands. My neuropathic pain started about 10 weeks ago. At first I just itched all over and noticed that my skin was very sensitive to fabrics of any kind. My skin was suddenly irritated by all of my clothing, and even the soft sheets on my bed. The itching quickly progressed to pain that is sometimes like ants biting you, stabbing pains, pinching pains (as if someone just pinched you very hard), is worse after taking a shower, and is always worse at night. I put lotion on all over my body about 3-4 times a day, as that seems to help temporarily. Keeping my bedroom very cool at night is a must. I have to let the AC run long enough to cool down the sheets before I can stand for them to touch my skin. I have seen a neurologist who did blood tests which didn't show any dramatic results. It showed I have a very low monoclonal protein level for which the neurologist referred me to a hematologist. It in no way indicates that I have Multiple Myeloma, thankfully. It's low enough as to indicate that I might have some complications that can cause something akin to diabetic neuropathy, but nothing else. I am scheduled for a Nerve Conduction Study on Sept 1. My primary care physician had started me on a low dose of gabapentin, which the neurologist raised to 300 mg 3 times a day. I have been on that dosage for a little over a week and it hasn't helped yet, although I keep reading that it takes time for it to build up in your body. I hope it doesn't take too much more time. The neurologist sent a referral to the hematologist and am waiting for them to call to set up an appt. I don't really think he will be able to shed much light on this, but since it was suggested I seem one I am willing to go. I can't discuss any of this with my PCP as he has been out of the office for a week and will be gone all of this next week. My appt with him is not until Sept 2.
So that is my story thus far. Has anyone experienced the same sort of neuropathic pain as what I have described?
Thanks for listening. God bless all of you. Many of the stories I've read on this forum indicate that you are stronger and braver than I am and many with worse symptoms and pain than I have.

Hello @maggie1960, Welcome to Connect. Hopefully your nerve conduction study on Sept 1st will help provide more information on the way to a specific diagnosis. Learning as much as you can about your condition will help you better advocate for your health and hopefully find a treatment that works for you. It sounds like you have that mind set already which is a great start. Here are a couple of websites you might want to bookmark for learning more about neuropathy:

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You also might find the following discussions helpful:
-- Neuropathy 101 - Knowledge is power?: https://connect.mayoclinic.org/discussion/neuropathy-101-knowledge-is-power/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You mentioned having a very low monoclonal protein level but the doctor said it doesn't signify Multiple Myeloma which is great. Does your doctor think there may be a connection with neuropathy and a low monoclonal protein level?

Thanks, John, for the suggestions on the websites and groups. I'll definitely look at them.
My doctor, which at this point would be the neurologist, doesn't really answer questions, so I don't know what she thinks about a connection between neuropathy and the low M Protein level. All she did was make a note on the lab report that she would refer me to a hematologist. I had to do my own research, as most of us do, to even find out what the M Protein level meant. Hopefully, I will be seeing the hematologist this coming week. I don't know that he will be able to shed any light on it but I have to at least go and ask questions.
Thanks so much for your welcoming and encourging words!

If there is one thing that I have learned is keep asking questions of your doctor. I think they like to help if they have the answers. Don't want to overload you but there is a site I really like because I had the opportunity to meet the doctor, Victor Montori, that cofounded the site - The Patient Revolution. He has some great tools for preparing questions for an upcoming appointment -- https://www.patientrevolution.org/tools

There is no such thing as overloading when it comes to helpful information.
Thanks for the link to Patient Revolution!

John, thanks again for sharing information on The Patient Revolution. I just went through the interactive tool for preparing questions for your doctor and found it very helpful.
But even more than that I am incredibly impressed with the website and its insights to really thougtful patient care or lack thereof. I've bookmarked it so I can read more.

I had similar sensations that started a year ago. I couldn’t sleep and had to stand since sitting or laying was difficult.

I did all the studies. No one could tell me anything. I was put on Cymbalta. A year later it is still there but now it is tolerable. Much better! Not sure if it is due to the Cymbalta or my issue have improved. I do take B12 and B complex along with a multi-vitamin every day.

Hope your symptoms improve like mine has. It was very frustrating talking to my neurologists (went to multiple), all they had to offer was pills. At time, I wasn’t sure they believed me.

John, again I want to thank you for recommending The Patient Revolution. I've read a few of the articles and have signed up for their newsletters, but I first watched the video of Dr. Montori speaking at the Lown Conference. It literally brought tears to my eyes. I was overwhelmed with emotion to know someone truly cares about patients and how medical care has almost completely become industrialized. I am so grateful to Dr. Montori and all who are involved with The Patient Revolution. You're probably tired of hearing stories from old people like me, who at 71 remember what good, caring healthcare was like, but at my age it boggles the mind and saddens me greatly to see how much it has changed. When I was a little girl my parent's doctor came to the house to see them on many occasions, and not because we lived in the country and it was what country doctors did. We lived in Austin, Texas. Not a big city then, but a growing one. Sometimes when he made house calls he brought his wife along. Almost 30 years later he and his wife attended my wedding. He was a brilliant diagnostician, and after I was old enough to leave my pediatrician he became my doctor. Whenever I had an appointment with him he always took the time to ask about what was going on in my life, and connect with me as a person. If you were in the hospital, after a full day of seeing patients in his office, he made rounds to see every patient, even if it was 10:00 at night when he got to your hospital room. There were no such things as hospitalists. The medical profession has come so far from that kind of personal, caring, hands-on way of practicing medicine. I started to realize sometime ago, and realize it more and more all the time, that I am having to fight for good doctors, and good healthcare. I am having to be my own advocate. My late husband was a doctor who was incredibly empathic with his patients, and I always remember him telling me that there are a lot of doctors who think MD stands for Major Deity. He was sadly right. So you can see how I am beyond grateful to know about The Patient Revolution. Many, many thanks for putting me in touch with it.

@maggie1960 I never get tired of hearing this type of story, especially from a youngster like yourself. At 79 I still look forward to learning more about my health and "partnering" with my doctor on decisions that impact my health. Of course I have lots to learn and I do have to remember who the doctor is 🙃and it's not Dr. Google. It helps me ask better questions which hopefully become better outcomes for my healthcare. If you like Dr. Montori, I think you will also like Dr. Amit Sood, Another Mayo Clinic doctor I had the opportunity to listen to at meeting a few years back. Loved his "A Very Happy Brain" video" -- https://youtu.be/GZZ0zpUQhBQ. He also gave a great TED Talk that you might find interesting -- Happy Brain: How to Overcome Our Neural Predispositions to Suffering: https://youtu.be/KZIGekgoaz4