Tingling in arms and legs - will this get worse? Can I still function?

Hello Mary,

Certainly agree that you should get a second opinion on surgery. However, stenosis surgery has improved dramatically so it is common not to have a fusion with it. I had a 5 hour stenosis surgery on my lower back fixing stenosis in both the facet joints and my central spine and the recovery was really easy and it made it so I could walk again. Additionally, 4 fiends have had both cervical and lower back stenosis surgeries which worked great, removed the pain and all four were back to work in two weeks. I put off back surgery for decades, but no longer fear some back surgeries. Be sure that your surgeon only does back surgeries and is up on the latest techniques.

That being said, as far as your concern about where your neuropathy is going to go and how it will affect you, I have a couple comments. First, keep working on finding a cause because if you get a diagnosis you will know the likely course. However, if you are like me and have idiopathic neuropathy so the cause is currently unknown, then you need to pursue symptom relief. This can be a range of medications, IVIG is the only one that can actually reverse symptoms. Nerve stimulators and pain med pumps can come in if it is really bad. Second, the time you are worrying is kind of wasted worry. The neuropathy will progress as it will and you have a lot of adaptation and coping mechanisms. When the neuropathic pain first move to my hands, face and head (It had slowly progressed in my feet and legs for years before this happened) I said that I would kill myself if this is permanent. The fact is they are both much worse but through meditation and mindfulness, I have come to peace with it which I find to be a much more productive way to deal with the unknown progression. There are many apps out there (Headspace and calm) and CDs (Full Catastrophe Living, John Kabat-Zinn, Tich Nat Hahn, Pema Chodren and many others). Meditation really helps more than most medications.

Mark

sdemaria, sinjin, arcticmark, mary505, and others who are at the point of considering neck surgery to relieve pain in arms and hands. My advice is to not wait if the MRI and other tests indicate severe pressure on the nerves. The pain in my arms had increased so that I could not sleep and often just sat on the edge of the bed and sobbed. I believed at the time that surgery wasn't a magic fix and had made a vow to not go that route ever again. However, I did go visit my orthopedic surgeon who had done the delta reverse on my shoulder, because I trust him. He took me to his cervical surgeon and the two of them consulted. They felt that my situation was at the crisis stage. To wait would mean that the nerves would be damaged to the extent that they would probably never recover. They were absolutely right and I am glad I consented to immediate surgery. Some of the damaged nerves have slowly recovered and stopped creating so much pain. Others, however, were already so damaged that they would not be able to heal within my lifetime but could get a little bit better. Nerves are not like bones....they take a long time to recover. The bottom line is that after the 3 months of recuperation in one of those neck braces, my pain relief was about 75% and I no longer sat on the edge of the bed at night planning my demise. I struggle with the neuropathy but if I had waited any longer it would have been so much worse. (And I only threw that darn neck brace across the room once.)

Go to You Tube and check on Platelets Lysate. There are many clinics in the US claiming to be experts in this kind of treatment. However, the one that pioneered this treatment is Centeno-Schultz Clinic in Colorado. In my view it will be appropriate to do your own search about the efficacy of Platelet Lysate Injections before opting for surgery, which should be used as the last resort.

Mary,
I'm responding because I have lived with all these same symptoms so I will relay my experience. It will be beneficial to get several opinions and if you haven't been seen at Mayo, I highly recommend it. That is where I had my surgery for cervical stenosis, and all of my symptoms were resolved by my surgery.
It was about 3 years from my first symptom (ankle pain when I turned my head) to my surgery when I had many more symptoms. I had a whiplash 20 years ago and had foot drop back then which resolved, by this returned again when my spine issues began years later. I also have thoracic outlet syndrome (TOS) which causes arm pain and weakness. I was in physical therapy for TOS when my spine symptoms started. Muscle spasms were moving my neck vertebrae around which would increase pressure on my spinal cord and I would get foot drop intermittently. When my therapist worked on me and treated the spasms and gently nudged things back where they should be, I walked normally again. The level of my bad disc would cause arm pain as well as the TOS. I had a compressed spinal cord, and spasms that twisted, tilted and turned my vertebrae increased all my symptoms. I was turned down by 5 surgeons who misunderstood my case before I came to Mayo over 2 years time. During that time, my pain increased and was everywhere in my body. It got bad enough that if I bent my neck, I sent an electric bolt pain down my entire body. I lost about 50% of muscle mass in my arms and shoulders and was getting sharper stabbing pain beyond the tingling and pins and needles. I had places that were getting numb. I could see on my MRIs that in 9 months time, the bone spurs had doubled in size with all of it pressing into my spinal cord in my neck. I was loosing the ability to hold my arms up. Driving was very painful and fatiguing and it sent sharp pain down my arms. I am an artist and was loosing the ability to hold my arms up and loosing the coordination in my hands. My wonderful Mayo surgeon saved my ability to work as a fine artist, and to thank him, I painted his portrait as a gift. It was really for both of us and I could prove to myself that I was regaining my ability, and it was to thank him for the gifts he returned to me. I am 20 months post op now, and my lost muscles are slowing coming back with my progress in physical therapy and exercise. It is a slow recovery and for me this was life changing. I suggest you track your symptoms in dated diagrams and journals so you will know if they change. You can develop permanent damage and disability with spine problems. In general, an earlier intervention is better for your recovery, but only a surgeon could answer that for your specific case. Choose your surgeon carefully. I would recommend getting other opinions now and learning about your options. If you wait, you may find yourself with urgent surgery and no time to get other opinions if you suddenly got worse. The last surgeon I saw prior to Mayo wasted 6 months getting tests, and then decided not to help me. I came to Mayo and had an offer for surgical help in a week. I've had a great recovery and regard my surgeon highly. If I should I ever need spine surgery again, I will come back to Mayo. You may need to advocate for yourself for imaging to track the progression of your symptoms which are warranted if you are getting worse. I hope all that information helps in your journey. I did everything I could to have a great outcome before and after surgery and it was very successful. I'm not back to 100% strength yet, but I am making great progress and doing my paintings again.

If you're curious, you can find out more about about the portrait of my surgeon in the Art for Healing discussion in the Just Want to Talk Group. I was asked to post it and there is more about that story.

where do those not close to a mayo clinic I have bcbs but do not have out of network or out of state

Ok, my neuroaphy started during a gout attack. It started in my toes and spread to my feet and hands within a few weeks. I never had it before and the Dr. continue to say I am not diabetic. I was is good health up to that 3 week point never having it before. The treated the gout with Colchicine, steroids and allopurinol during the 3 week time. I have every blood test known with no direct cause. I have some RA factor but not enough for clear diagnosis of RA. Seen a neurologist and dont have permanent damage yet but have flares from food and sometimes without. I ate a single chocolate cookie last night and now my feet are on fire along with arms hands and legs. No DR can figure this out, seems like something attacked my nerves during the treatment. Can it be something attacking nerves and why can we not find the connection between sugar and the neuropathy. My mri shows a bulging disc at l5 and s1. All this led me to neck surgery on my c5,c6 disc replacement. Did not fix my sugar sensativity at all but it only been a week. Anyone that has some idea i am open to anything.

@cathy514 do you have a teaching hospital or medical school in your area? It might be worth calling Blue Cross Blue Shield and talking with one of their customer service reps. Have you checked into going to a Mayo Clinic Care Network location?

Mayo Clinic Care Network
-- https://www.mayoclinic.org/about-mayo-clinic/care-network/members

I'm new to this site, and am trying to catch what I can of everyone's symptoms and actions trying to relate as much as possible. I have idiopathic neuropathy which seems to have progressed immensely since starting my new job. My feet have always hurt and fallen asleep when walking (which I love to do). After having my 6 yr old my hands would fall sleep from randomly, but it went away in my hands and arms at least. I've seen 2 different neurologist. After numerous tests he put me on 600 mg of gabapentin, but with babies n working straight graveyard the medicine made me more tired. I wanted answers asked other solutions, so I went t another neurologist. It seems that I am I idiopathic and they just want to push medicine on me. But the medicine makes me tired, I just want to know how worse it can get, what other options are out there for help. My hands and arms are acting up once again, it's interfering with my job. 😣

Hello @candicegaona381, welcome to Mayo Clinic Connect. I also have idiopathic small fiber PN but I don't have any pain with it. I only have numbness and tingling. I have no medical training or background but when talking with my doctor team and confirmed by the Mayo neurologist that diagnosed me I found out that the drugs given for neuropathy only address the pain by blocking the signals in the brain. The neurologist told me there are no creams, salves, topicals, etc. that will help with the numbness. That's when I started looking into alternative treatments for neuropathy. I take supplements I found in a closed Facebook group that also has a website - http://solutions2pnpd.com/ and while it doesn't cure PN it does address the symptoms of neuropathy. I don't know if it will work for you but it definitely has helped me. You can read my PN story in an earlier post here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Hoping you find some answers soon.

John