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?

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

@suezq

I’ve been to numerous physical & Occupational therapists, on & off since 2005. As I stated, the physical therapists did help. They can only go so far & then I went further on my own, going to the YMCA. The Occupational therapists were the big disappointment. My dermatologist told me it needs to be a hand specialist, not just a hand therapist. There’s a big difference he told me.
I recently wanted to start both therapies again. I “interviewed” numerous companies that took my insurance. I even started with a company near my home (even though to my surprise & disappointment they didn’t even have an elliptical). I could tell after day 1 of Occupational therapy the man wasn’t going to know how to do anything different than what previous Occupational therapists have done. I also asked several of my doctors if they could help me find a hand specialist & physical therapist who knows how to work with chronic neuromuscular conditions. No one could help.
I believe if I lived near a bigger specialty clinic like Duke or Mayo it would be easier to find appropriate & qualified therapists.

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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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@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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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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@avmcbellar

Finding out what is going on will determine the treatment. Hopefully you will find out more through your rheumatologist. You can ask any doctor you see to provide an order for home care for you. Since that doctor will be the one giving the orders and consulting with all the disciplines(i.e. nurses, physical and/or occupational therapists) it makes sense for the doctor to know what is going on in order to be in charge of the home care you receive. If you need any assistance in guidance let me know. For years I worked in that industry.

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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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@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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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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@judypall

Anyone have luck with accupuncture for PN?

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I tried it once. You should try it, I suppose, if you have the financial means. I could’ve gotten 1st 3 sessions free & then started paying for it, but I never returned. It is offered through the Integrative Health Department at our Local Cancer Care Facility.

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@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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