Living with Neuropathy - Welcome to the group

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?

@summertime4

Thank you for this information. I line in a small community and their are limited options for health care. I am on other other side of Baltimore which houses John's Hopkins and Annapolis where there are any more options. Problem is the distance and the driving. I know several agencies come to this side of the State so I may be able to reach out to them when I find out what I need.

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Give home care a shot. It may not cost you anything. I know Encompass Health Care also has home care. If Medicare is the primary medical insurance the cost for home care is $0 providing the criteria of being home bound is met. Let the home care agency determine that. The agency will ask the patient questions. If the same person goes to outpatient rehab services the cost is 20%. Medicare pays %80 of the bill.

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@avmcbellar

I agree, living in a populated area would provide more treatment opportunities. I know occupational therapists can be hand certified. Does a hand specialist provide therapy? I am sorry but I don’t know the differences and your needs. There should be a website feom your state to look up medical licenses. Medical licenses are public information. Any occupational therapist must get a license to work in a particular state. Have you tried Encompass Health? I know they are a nationwide company.

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I have not tried Encompass health. I called around to several local facilities that take my primary & secondary insurance. And, yes, in the category of Occupational Therapy there are hand therapists as well as hand specialists. That’s the catch, I need a hand specialist at a local facility that takes my primary & secondary insurance. Haven’t had any luck & my doctors can’t help either.
Thanks!🙏🏻

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@avmcbellar

Give home care a shot. It may not cost you anything. I know Encompass Health Care also has home care. If Medicare is the primary medical insurance the cost for home care is $0 providing the criteria of being home bound is met. Let the home care agency determine that. The agency will ask the patient questions. If the same person goes to outpatient rehab services the cost is 20%. Medicare pays %80 of the bill.

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Oh, one other thing I forgot to mention. There is no driving involved for home care. They will come to you. For home bound status, going to places is allowed but limited like going to the market, hairdresser, and church.

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@suezq

I have not tried Encompass health. I called around to several local facilities that take my primary & secondary insurance. And, yes, in the category of Occupational Therapy there are hand therapists as well as hand specialists. That’s the catch, I need a hand specialist at a local facility that takes my primary & secondary insurance. Haven’t had any luck & my doctors can’t help either.
Thanks!🙏🏻

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Sorry @suezq, one other thing I forgot to mention. There is no driving involved for home care. They will come to you. For home bound status, going to places is allowed but limited like going to the market, hairdresser, and church to name a few.

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@steeldove

Not sure what you mean by a hand specialist. Last week I saw an orthopedic hand doctor for issues with a trigger finger and numbness/weakness in my right hand. I was very surprised when the x-rays showed absolutely no arthritis in my hand (My entire spine is very, very arthritic, and I've had two shoulders replaced because of arthritis damage. So, maybe check with a local orthopedic practice to find a hand doctor.

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In the category of Occupational Therapy, there are hand therapists & hand specialists. I need a hand specialist who works for a company in my area that takes my primary & secondary insurance. I’ve contacted numerous companies (gotten referrals from other companies, etc), but haven’t had any success. Even many of my Doctors haven’t been able to help.
Thanks🙏🏻

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@avmcbellar

Hi @steeldove, I had replied to @suezq. She had mentioned there is a difference between a hand specialist and hand therapist. I agree with you. My husband had gone to an orthopedic hand doctor for his diagnosis. The doctors can do x-rays and surgeries if needed but will not do hand therapy. He was very knowledgeable and helpful in confirming our beliefs and diagnosis. Thank you for your help.

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Hi, I have an orthopedic hand specialist doctor.
I was never talking about that doctor or his services.
I was only specifically talking about Occupational therapy, in the category of hand therapy. My dermatologist told me there are two categories (in Occupational Therapy): hand therapists & hand specialists (also therapists). I need an occupational therapist who is a hand specialist, not just a hand therapist. They are both therapists, not hand doctors (like my orthopedic hand specialist doctor).
Thanks🙏🏻

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@avmcbellar

Sorry @suezq, one other thing I forgot to mention. There is no driving involved for home care. They will come to you. For home bound status, going to places is allowed but limited like going to the market, hairdresser, and church to name a few.

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Sorry, I believe you have mentioned Encompass Health to other people in other conversations/topics & your above reply was intended for one of those other people. My conversation has been about a Occupational therapy (hand specialists).
Thanks 🙏🏻

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@suezq

Hi, I have an orthopedic hand specialist doctor.
I was never talking about that doctor or his services.
I was only specifically talking about Occupational therapy, in the category of hand therapy. My dermatologist told me there are two categories (in Occupational Therapy): hand therapists & hand specialists (also therapists). I need an occupational therapist who is a hand specialist, not just a hand therapist. They are both therapists, not hand doctors (like my orthopedic hand specialist doctor).
Thanks🙏🏻

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Thanks @suezq. I didn’t know there were 2 types of occupational therapists. Good to know. I will ask an occupational therapist who wants to get certification for hand therapy.

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@judypall

Anyone have luck with accupuncture for PN?

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Yes, I went to an Asian acupuncturist who was highly recommended, he was trained in China and has practiced for 40 yrs. I had him work on one of my hands which had gotten worse, (I have SFN) I did not notice any improvement which surprised me because I it had helped me in the past. I only went once, my insurance did not cover the cost but had it helped even a little I would probably have gone back.

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I absolutely loved acupuncture (primarily the 30 minute meditation I did along side with the needles) and mostly my acupuncturist, an experienced Chinese trained doctor. I tried it for almost four years. However since it wasn't covered by insurance and I really didn't think it helped my PN I couldn't justify continuing it. But, as we all know, every body is different and it might work for someone else. Again I would give a shout out for Myofacial Massage and Reflexology. Margot

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@avmcbellar

Hi @steeldove, I had replied to @suezq. She had mentioned there is a difference between a hand specialist and hand therapist. I agree with you. My husband had gone to an orthopedic hand doctor for his diagnosis. The doctors can do x-rays and surgeries if needed but will not do hand therapy. He was very knowledgeable and helpful in confirming our beliefs and diagnosis. Thank you for your help.

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I think there are orthopedic hand specialists who do surgery and others that treat hand issues, but do not do surgery. The doctor I saw did a painful injection into the palm of my hand to loosen up the tendons. If I needed to see and hand surgeon, I'd have had to wait a couple of months for an appointment.

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@avmcbellar

Thanks @suezq. I didn’t know there were 2 types of occupational therapists. Good to know. I will ask an occupational therapist who wants to get certification for hand therapy.

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Sure thing! I didn’t understand your last sentence.
Thanks 🙏🏻

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@suezq

Sure thing! I didn’t understand your last sentence.
Thanks 🙏🏻

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No problem @suezq. I was making a comment I will find out more information through an occupational therapist who wants to get certified as a hand therapist.

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@retiredteacher

@brendakaye I have tried the creams you mentioned and no help. I have diabetes and have severe pain in the soles of my feet. I would like to try CBD/THC but I don't know what it is. Can I get it over the counter at a drug store or does it require a prescription? I am close to not being able to walk, so I desperately need help with something. Since this helped you, I'd like to try it. I'd appreciate knowing what it is and where I can get it.
Thanking you in advance.
Carol @retiredteacher

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@retiredteacher Carol, I am so sorry you are going through this, you had so enthusiastically started the walking group and now you have trouble walking. It really does not seem fair.
CBD is available at some stores that have opened up that specialize in it. It is also available on Amazon. I only know that you should check on the source, some are not as good as others. It really seems to be the new wonder drug.
JK

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@contentandwell

@retiredteacher Carol, I am so sorry you are going through this, you had so enthusiastically started the walking group and now you have trouble walking. It really does not seem fair.
CBD is available at some stores that have opened up that specialize in it. It is also available on Amazon. I only know that you should check on the source, some are not as good as others. It really seems to be the new wonder drug.
JK

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@contentandwell It is ironic, but I hope to find something that will help so that walking is possible again. At this point, I cannot even grocery shop, so my husband is having to do that in spurts. We'll get through this though my feet may not improve, My concern is the erratic blood numbers for my diabetes. I have researched and see that extreme heat definitely affects the numbers. We have had temps ten to fifteen degrees higher than the norm and even in in the house with AC it is still too warm. We just take it one day at a time.
Thanks for caring.
Carol

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