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

Posted by mary505 @mary505, Aug 12, 2018

My symptoms began a year and a half ago. I had Sciatica pain, foot drop and foot tingling – all on left side. Physical therapy greatly improved the foot drop and pain was gone after 2 months. But tingling has spread – it's now in both hands, arms, legs and feet.

MRIs have shown I have disc degeneration and herniated discs in both neck and lower back. Before the arms started tingling, I had seen surgeon who recommended surgery. I have not done that and I'm concerned about permanent nerve damage. Will this get worse? Will that prevent me from doing normal things – like driving or holding things?

Thank you for any information you can provide!

Interested in more discussions like this? Go to the Neuropathy group.

@nkhan1958

I suggest you try platelets lysate injections first

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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.

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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.

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@jenniferhunter

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.

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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.

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@jenniferhunter

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.

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

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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.

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@cathy514

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

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@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

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@arcticmark

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

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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. 😣

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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

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I'm 33 years old with idiopathic neuropathy. I'm seeing my second neurologist still seeking answers and hope. I have 3 little ones and am the main provider for my household and am ready to quit, but can't. I have bilateral club feet which I originally assumed was the source of pain and numbness in my feet when walking. Until I got a toothpick jammed in my foot from chasing my little one around in a game of tag and realized how little feeling I actually had in my right foot. Then I had my second child (6 years ago) and the symptoms were in my hands and arms. I was scared to carry my daughter's around from the random pains and numbness radiating throughout. Then it hit me hard, I was changing the oil in my car and was unable to turn the wrench. My hands were shaking and ynumb, and I had to call my husband for help, he was happy to help my stubborn ass, but I was mad, hurt and disappointed in myself. My hands quit acting up so bad, but I was still in pain.
That's when I first seen the neurologist, during testing they doubted someone so young could be as bad off without no actual reason, but the tests proved the lack of responses my nerves were sending and so forth. I was put on 600 mg of gabapentin, but I have babies and a straight graveyard job and the medicine made me more tired, so I quit taking it.
Onto my second neurologist for an answer and natural solutions, he had optimism the first few appointments, but after numerous test, blood work and so on he was stumped and his assistant/ nurse practitioner just classified me as idiopathic. I'm stubborn, I don't like that answer, I want answers, my body is getting worse once again, I started a new job 6 months ago it is more physical, but I haven't given up completely. My hands are getting worse once again.
What

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@johnbishop

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

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John,
I'm hoping for answers too, I'm flustered and disappointed but I'm stubborn and can't give up on behalf of my family. But it's depressing. I am happy to be able to share my experiences and learn from others experiences as well. I am nervous for the future granted I'm in my 30's and it's progression. Yet I'm greatful that I still have some abilities to care for my family. Doing my little girls hair before school is one of the simplest yet biggest drlepressions as their mother with numb, tingling hands that literally ache, throb and shake.
Thank you
Candice

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@candicegaona381

John,
I'm hoping for answers too, I'm flustered and disappointed but I'm stubborn and can't give up on behalf of my family. But it's depressing. I am happy to be able to share my experiences and learn from others experiences as well. I am nervous for the future granted I'm in my 30's and it's progression. Yet I'm greatful that I still have some abilities to care for my family. Doing my little girls hair before school is one of the simplest yet biggest drlepressions as their mother with numb, tingling hands that literally ache, throb and shake.
Thank you
Candice

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Hi, @candicegaona381 – I wanted to add my welcome to Mayo Clinic Connect. Sounds like you are not giving up on solutions to the idiopathic neuropathy you've been diagnosed with. I can imagine how it might feel depressing, though, to have numb and tingling hands and not find an answer that worked well for you.

I also wanted to invite @marinelastef @sinjin @sdemaria @arcticmark and @artscaping to return to this discussion and see what thoughts they may have, especially for non-medication options.

Speaking of medication, however, @candicegaona381, did either of your doctors have any options other than the gabapentin that might not make you tired?

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