Living with Neuropathy - Welcome to the group

I started out doing a few things for balance. My body so messed up it's difficult to exercise. I have both knee replaced, I have a bad back, failed surgery, I have both shoulders reverse replacements, my right one done 4 times. I have a plate and some pins in my left wrist, and I have my right femur broken in two places in the last year. Exercise??? Not an easy thing to do when you can't stand and balance. I've tried some chair yoga, that wasn't easy either. I also have fibromyalgia my body hurts everywhere. I'm lucky I'm still moving. And of course exercise isn't my favorite thing to do. If I thought it was worth while, I would have kept it up. I get shooting pains all over like electric shocks. I have a particularly bad one where they took bone marrow out of butt. Sometimes, I'm sitting and all of a sudden I have to scream in pain, because the shocks hurt so bad. i get a lot of strange looks from people when that happens. Right now I think it's affecting my bowl and bladder. Having problems going to the bathroom. What's next? I can't wait till God says come with me.

Good evening @grannymary7077, welcome to Connect and our neuropathy group. I think you can do a lot to help yourself with your neuropathy symptoms. I have had SFN (small fiber neuropathy) since 2013 when I was diagnosed via a punch skin biopsy. Mine is rather severe without enough nerve cells to do a good job of creating feelings in my body and especially in my feet. What started with my toes in the right foot has now invaded both feet and is continuing to march right on up my leg. Since the diagnosis, I have been through quite a few prescribed medications and custom lidocaine topicals created by a specialist pharmacy as guided by my neurologist. These worked quite well until my condition went beyond the capabilities of those creations.

Since then I have settled on two treatment options plus some special exercises for strength and balance. First, I use one of two medical cannabis topical balms. One is for acute pain and the other is for chronic pain. Both contain CBD and THC at different levels.

At this point, I also have my feet treated twice a week by an MFR (myofascial release) therapist so that I can continue to drive. Have you heard of or read about MFR yet?

Your approach is excellent. Read, research, and study everything appropriate for your condition. Knowledge is power and you will benefit tremendously from the experience. I am happy to help you on this journey.

What are you most concerned about at this time?

May you be free of suffering and the causes of suffering.
Chris

No. Is that a massage?

My name isGinger. I have neuropathy as a result of taking chemo for breast cancer. My husband who recently passed used voltaren pads for his neuropathy that were prescribed and he thought they were helpful. The cream version of voltaren does not need a doctor's prescription. I am 83 (84 next month) and try not to take any more additional meds than I absolutely need. I have also used the CBD cream and voltaren, both at different times. It helps but I am not regular in apply them to my feet and legs. You might try one of these topical remedies rather than ingesting a pill.

Hi @eep, I am so sorry you are having so much pain. I have had only a few of the things you have had, but I was having muscle spasms in my back that hurt like that a few months ago. My doctor tried 5 days of muscle relaxer medication, but it didn't help. The spasms were so strong that it felt like the bed bounced under me. Ice was the only thing that did. A month later, he gave me 10 days of the same medication, and it was like a miracle. It did not cure my back problem, and I still had a backache. It was only that the muscles in my back quit trying to protect me by making every movement so painful. Good luck. I hope you can get at least a little relief. Mary

Thanks Chris, At this point I would like to find a way to walk around and sleep without hurting. It is only my toes right now. I had tingling for several years without thinking about neuropathy because it only bothered me at night. Now, the burning bothers me all the time. I tried the hemp cream today, and it works for a few hours. I think I read that I can use it several times a day. I will give the other creams a try too, maybe alternating several on different days. I have also ordered shoes recommended by someone in the group. I have the device sold by Amazon that keeps the bedclothes off my feet at night. When nothing else works, ice helps. Mary

The manual physical therapy is a combination of massage, mild exercises and learning the proper way to use our body. It is valuable to do the exercises at home also. They usually do not use machines at our facility. I had this type of therapy for scoliosis and arthritis in my back and for a broken arm. My husband suffers from balance problems, leg weakness and difficulty walking.

What is a sanexas machine?

Thank You Mary for your response. I have gotten some injections in my thigh
And it helped the pain in my groin and part of my thigh. I don't remember what it is called . They use ultrasound and put in a needle in certain areas and it heats up and burns I think part of a nerve. I can't remember what it is called. That worked for a while, till I fell and landed on my but and right thigh, and that jared the metal they put in for my broken femur. Now it hurts again. Can't have that
done too many times. I'll take all the prayers that come my way. Hope you have success. EEP

Hello, I have loss of sensation on the left side of my body. Facial down to toes. Both feet have that "numbness sensation as well" Sometimes. my right hand and fingers. Nerve test on November 18 showed no damage to nerves (?? so then why are my nerves not working properly). One nerve they noted was slightly out of whack.

My PCP is not concerned. She told me that she has several patients with a lower B12 than I. My B12 was 203. She has me on 1,000 mg B12 a day. My neurologist whom I met on August 18 (symptoms started August 8) did some blood tests and ordered a brain Catscan (I have a piece of metal so no MRI). Catscan was fine. Then told me I'm probably focusing on the numbness too much. "Don't think about it so much and it might go away".
They both have been told by me that I am a vegetarian. We are at MUSC in Charleston, SC.

So, I'm starting to take 2,000 mg a day on my own. I've heard from others in FaceBook groups that I should probably be taking 4,000 mg a day of B12 since I cannot get the shots through my PCP.

I have pulmonary sarcoidosis which my pulmonary doctor says is in remission and now MAC has showed up in my sputum again - a different strain - and they asked for a repeat sputum before starting any treatment.

I requested B12 shots from the start - I prefer to be aggressive on treatment so it does not get worse and hopefully I can recover from this numbness. PCP said No to that and Neurology agreed with her.

Also have had a barium swallowing test, stomach emptying test as I feel full right away but apparently my stomach is a fast dump. Had an endoscopy and all is fine. No idea if I'm lacking intrinsic factor or what else.
I asked PCP to explain the flags in my blood work and she replied "this is what happens when patients can see their records". She was very condescending.

I just started reading Could It Be B12? An Epidemic of Misdiagnoses
Book by Jeffrey J. Stuart and Sally M. Pacholok

I could really use some feedback and guidance.
What do I do?

@phoenix29412, My best advice is to keep doing what you are doing - asking questions. I would be a little irritated myself if my PCP was condescending when asked a simple question which is part of their job to explain to their patient. I might be condescending right back and ask - would you rather I look to Dr. Google to find my answers? Then explain that you want to learn as much as you can about your health so that you can make more informed decisions.

Here's a good article on B12 deficiency with reference links to studies that you might find helpful.
-- 9 Signs and Symptoms of Vitamin B12 Deficiency:
https://www.healthline.com/nutrition/vitamin-b12-deficiency-symptoms
Also, here are a couple of "tools" you may want to add to your working with doctors arsenal:
-- Tools for the Visit: https://patientrevolution.org/visit-tools
-- Communication Barriers: https://patientrevolution.org/barriers