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Living with Neuropathy - Welcome to the group

Posted by @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

REPLY

@mihaiotto

Hi I am In Canada for the last few weeks I am developing numbness on the feet and hands

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@mihaiotto My original neuropathy was in my hands and feet. Neurologist said of no known cause. Recently, this week, had x-rays of cervical spine and they found multi-level arthritis and degenerative disc disease.

You may want x-rays at your next appointment just to see if there is anything going on there.

Just a thought.

all you have to do is to be strong, because whatever will be . will be

@beckiw814

@mihaiotto My original neuropathy was in my hands and feet. Neurologist said of no known cause. Recently, this week, had x-rays of cervical spine and they found multi-level arthritis and degenerative disc disease.

You may want x-rays at your next appointment just to see if there is anything going on there.

Just a thought.

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I had CT scan and I have a bad neck, but I don t think is from there. I have like tightening and then a release which is giving tingling on the body , that is creating neuropathy

@beckiw814 Seems to me that your pain management doc is missing the point that most neuropathy is not a problem of muscles or tendons or bones or joints. Rather, it is usually a problem of nerves, in some form. It may be nerve wires coming apart from each other, or having something eat away the sheath, or something similar. physical therapy can help, but if the problem is in the nerve endings or connections, the PT rarely has any real value. My own neuropathy stems from the nerves in my neck and spine as nodules and spondilitis and other stuff pushes on and tries to destroy the nerves. The neurologist should be able to find that. Of course you may have to go the mayo or somewhere to find a neurologist who can find it.

Liked by steeldove, barbarn

@oldkarl

@beckiw814 Seems to me that your pain management doc is missing the point that most neuropathy is not a problem of muscles or tendons or bones or joints. Rather, it is usually a problem of nerves, in some form. It may be nerve wires coming apart from each other, or having something eat away the sheath, or something similar. physical therapy can help, but if the problem is in the nerve endings or connections, the PT rarely has any real value. My own neuropathy stems from the nerves in my neck and spine as nodules and spondilitis and other stuff pushes on and tries to destroy the nerves. The neurologist should be able to find that. Of course you may have to go the mayo or somewhere to find a neurologist who can find it.

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@oldkarl Thanks for the information. I am very comfortable and believe in my current neurologist. If he doesn’t do further testing after seeing this report I will definitely go to the Mayo Clinic if necessary.

@beckiw814

@johnbishop They said to see the pain management doc and that he may want me to do physical therapy. I am in so much pain today that the thought of exercise or therapy would be too much right now. I am on so many meds for the arthritis, high BP, neuropathy and high cholesterol that it’s rediculous. Physical therapy, the right kind, has to be next. I thought a hot shower would help me today but it didn’t and now I’m exhausted. I am only 51 yrs old and this just stinks. I hAve always enjoyed my gardening but with my left hand so numb and painful I cannot even do that right now.

My mom passed away in July and I have gone downhill since then. Going to counselor for that but not helping much so far. I do like the counselor so I am hopeful.

Thanks,
Becki

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Hi Becki @beckiw814, sorry to hear about your recent loss of your mother. Hoping the counselor can help and liking the counselor is probably a good start. When do you see the pain management doctor? It might be a good idea to take a list of all your medications with you to the appointment and discuss them with the doctor.

If you are able, it would be great to get an update after you meet with the pain management doctor to see if they have any suggestions to help with the treatment.

John

@mihaiotto

I had CT scan and I have a bad neck, but I don t think is from there. I have like tightening and then a release which is giving tingling on the body , that is creating neuropathy

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Hello @mihaiotto, welcome to Connect. Neuropathy can also be caused by a pinched or damaged nerve. Here is an easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

Have you seen a neurologist?

@johnbishop

Hi Becki @beckiw814, sorry to hear about your recent loss of your mother. Hoping the counselor can help and liking the counselor is probably a good start. When do you see the pain management doctor? It might be a good idea to take a list of all your medications with you to the appointment and discuss them with the doctor.

If you are able, it would be great to get an update after you meet with the pain management doctor to see if they have any suggestions to help with the treatment.

John

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John, I don’t even have an appointment yet. Apparently, a good one lives behind me. 🙂 If I don’t hear from my primary by Monday at noon I will be calling them.

@deeinpa

Hi, this is my first post. I have neuropathy in my feet caused by both type 2 diabetes and chemo therapy in 2015. I've had the numbness & pins and needles for a while now, but something new has started. I get this very painful deep itch in the bottom of my foot. It is not on the skin, it is deep in the tissue. It comes with the pins and needles as well but the maddening itch that cannot be satisfied is new. Does any one else have this crazy issue? Thanks.

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@deeimpa. Oh my goodness. I thought I was the only person that had to deal with this maddening itch in the tissue of the foot. I only had it in my right foot. I tried everything…..hot water, heating pad, ice packs, dragging my foot back and forth across the carpet, and even screamingin frustration. The only thing that ever worked was valium that my friend got me from Mexico. I am not advocating that solution. I was desperate. Finally the itching stopped and now I just have blue/purple feet with numbness, tightness and discomfort. I wish you well on this journey for relief. Please let me know how it goes.

@beckiw814

@johnbishop They said to see the pain management doc and that he may want me to do physical therapy. I am in so much pain today that the thought of exercise or therapy would be too much right now. I am on so many meds for the arthritis, high BP, neuropathy and high cholesterol that it’s rediculous. Physical therapy, the right kind, has to be next. I thought a hot shower would help me today but it didn’t and now I’m exhausted. I am only 51 yrs old and this just stinks. I hAve always enjoyed my gardening but with my left hand so numb and painful I cannot even do that right now.

My mom passed away in July and I have gone downhill since then. Going to counselor for that but not helping much so far. I do like the counselor so I am hopeful.

Thanks,
Becki

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Sorry to hear that. I have alot of pain and weakness with my left hand which was my dominant hand and it makes me so tired sometime trying to use my right hand now . My left hand pain and swelling but some days I dont like being ask how I feel becasue I have always been over energetic to now I have no energy

@beckiw814

@mihaiotto My original neuropathy was in my hands and feet. Neurologist said of no known cause. Recently, this week, had x-rays of cervical spine and they found multi-level arthritis and degenerative disc disease.

You may want x-rays at your next appointment just to see if there is anything going on there.

Just a thought.

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@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

Sorry to hear that. I have alot of pain and weakness with my left hand which was my dominant hand and it makes me so tired sometime trying to use my right hand now . My left hand pain and swelling but some days I dont like being ask how I feel becasue I have always been over energetic to now I have no energy

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

I hope that you get some relief soon.

@johnbishop

Hi Becki @beckiw814, sorry to hear about your recent loss of your mother. Hoping the counselor can help and liking the counselor is probably a good start. When do you see the pain management doctor? It might be a good idea to take a list of all your medications with you to the appointment and discuss them with the doctor.

If you are able, it would be great to get an update after you meet with the pain management doctor to see if they have any suggestions to help with the treatment.

John

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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.

@nikkig

@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.

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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!

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