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?

@fuzzy1southernga

Thank you all so much for your kind & helpful replies. My emg report came today, means nothing to me. 1. NCS showed abnormalities of the bilateral sural sensory response. 2. EMG testing showed CRDs of the left IP muscle.
3. Sensory neuropathy. Thanks for any input you might have!!!

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Hi @fuzzy1southernga I agree with @johnbishop. The doctor ordering the labs is completely responsible for explainIng the results. He or she is receiving payment to advise you. Let them do their job. Hope you get answers.

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Of course you are absolutely correct. My results were on my portal, I do have an up-coming appointment. Thanks for your reply.

Liked by avmcbellar

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@sallymagint

Thank you Colleen and John, I’m hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it’s a team approach and I’m a vital player. It’s not easy, in fact it’s damn hard a lot of the time and some days I wonder how I’m going to get through it but I don’t have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I’m in the process of undergoing treatment with neurosurgery planned in the not to distant future. It’s hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There’s no guarantees and it’s still a long road to travel but I’m crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven’t delved into it too much due to the complexity, it’s helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I’ve been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you’re made to feel it’s in your head. But I’m not giving up, I can’t give up and through perseverance I’ve found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved

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I just found out why I've been feeling more pain … I picked up my rx for gabapentin at the usual pharmacy but it looked different – it's a large white tablet, it's usually a yellow-beige capsule. I asked the pharmacist why it looks different — she read the labels and said that it's 600 mg, the other is 400 mg. My doctor changed my rx to 600 mg months ago and sent the rx to the pharmacy but they kept filling the old rx until it ran out without asking me or the doctor if they were supposed to discontinue the old one and start the new one right away. The old rx just ran out so they finally filled the new one — perhaps I will feel less pain in a day or two. Do any of you have a good system for staying on top of your medications, doctors, appointments, and pharmacists? Something that's portable, easy to update, easy to read … ? Peggy

Liked by lorirenee1

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@pfbacon

I just found out why I've been feeling more pain … I picked up my rx for gabapentin at the usual pharmacy but it looked different – it's a large white tablet, it's usually a yellow-beige capsule. I asked the pharmacist why it looks different — she read the labels and said that it's 600 mg, the other is 400 mg. My doctor changed my rx to 600 mg months ago and sent the rx to the pharmacy but they kept filling the old rx until it ran out without asking me or the doctor if they were supposed to discontinue the old one and start the new one right away. The old rx just ran out so they finally filled the new one — perhaps I will feel less pain in a day or two. Do any of you have a good system for staying on top of your medications, doctors, appointments, and pharmacists? Something that's portable, easy to update, easy to read … ? Peggy

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@pfbacon. This is really unheard of. The pharmacy is supposed to follow doctor's prescription. If they do not have the higher dosage, they should let your doctor and you know. This is very dangerous. Maybe you should change pharmacy. One time my local CVS gave me prescription for another person. Fortunately I caught it right then and there. I never went back. May I suggest you check the label of the drug when you pick up your prescription to make sure it's the right dosage. I would also suggest you contact your doctor about this. I hope you feel better soon.

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@pfbacon

I just found out why I've been feeling more pain … I picked up my rx for gabapentin at the usual pharmacy but it looked different – it's a large white tablet, it's usually a yellow-beige capsule. I asked the pharmacist why it looks different — she read the labels and said that it's 600 mg, the other is 400 mg. My doctor changed my rx to 600 mg months ago and sent the rx to the pharmacy but they kept filling the old rx until it ran out without asking me or the doctor if they were supposed to discontinue the old one and start the new one right away. The old rx just ran out so they finally filled the new one — perhaps I will feel less pain in a day or two. Do any of you have a good system for staying on top of your medications, doctors, appointments, and pharmacists? Something that's portable, easy to update, easy to read … ? Peggy

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@pfbacon Wow! That's unacceptable service on the part of the pharmacy. Definitely time to find a better pharmacy service.

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@pfbacon

I just found out why I've been feeling more pain … I picked up my rx for gabapentin at the usual pharmacy but it looked different – it's a large white tablet, it's usually a yellow-beige capsule. I asked the pharmacist why it looks different — she read the labels and said that it's 600 mg, the other is 400 mg. My doctor changed my rx to 600 mg months ago and sent the rx to the pharmacy but they kept filling the old rx until it ran out without asking me or the doctor if they were supposed to discontinue the old one and start the new one right away. The old rx just ran out so they finally filled the new one — perhaps I will feel less pain in a day or two. Do any of you have a good system for staying on top of your medications, doctors, appointments, and pharmacists? Something that's portable, easy to update, easy to read … ? Peggy

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@pfbacon Peggy, I do have my own system, but it takes a lot more time and is much more specific than most. I take about 15 different meds, so I have to be careful. Each time I get one filled, I make sure I know exactly how it is supposed to help me. To do that, I daily record: Mornings– Glucose readings with insulin dosages, thyroxine tab, Methotrexate on Monday, blood pressure, temperature, protein foam on the urine, any blood in urine, weight, acetaminophen, any unusual pain, At noon record just the GL and insulin, acetaminophen and pain . Before dinner, acetaminophen PM. Bedtime: the BP readings, GL daily readings plus averages for today, last seven days, last 30 days, last 90 days. And more over the counter stuff. Most of my heart meds I take at bedtime. Works better, and will not counteract the levothyroxine or other meds. And every day I spend a few minutes or an hour adding to my internet record at https://bit.Ly/2jtypp9, available to anyone. During the time I am working on it I try to image what each med impacts, and whether or not it is helping. I gave up on gabapentin and several heart meds because they had no impact on me. And I moved meds around to make sure I was taking them properly. Anyway, it takes about an hour to 1 1/2 to get up and showered and dressed each morning, plus time to sort pills into trays each week, plus re-order meds, supplies, check appointments, etc. But I am still ahead of the game. When I was born 80 years ago, the doc told my parents I would never see my third birthday because of my muscular dystrophy, and my wife has been told several times I would not live until morning.

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@oldkarl

@pfbacon Peggy, I do have my own system, but it takes a lot more time and is much more specific than most. I take about 15 different meds, so I have to be careful. Each time I get one filled, I make sure I know exactly how it is supposed to help me. To do that, I daily record: Mornings– Glucose readings with insulin dosages, thyroxine tab, Methotrexate on Monday, blood pressure, temperature, protein foam on the urine, any blood in urine, weight, acetaminophen, any unusual pain, At noon record just the GL and insulin, acetaminophen and pain . Before dinner, acetaminophen PM. Bedtime: the BP readings, GL daily readings plus averages for today, last seven days, last 30 days, last 90 days. And more over the counter stuff. Most of my heart meds I take at bedtime. Works better, and will not counteract the levothyroxine or other meds. And every day I spend a few minutes or an hour adding to my internet record at https://bit.Ly/2jtypp9, available to anyone. During the time I am working on it I try to image what each med impacts, and whether or not it is helping. I gave up on gabapentin and several heart meds because they had no impact on me. And I moved meds around to make sure I was taking them properly. Anyway, it takes about an hour to 1 1/2 to get up and showered and dressed each morning, plus time to sort pills into trays each week, plus re-order meds, supplies, check appointments, etc. But I am still ahead of the game. When I was born 80 years ago, the doc told my parents I would never see my third birthday because of my muscular dystrophy, and my wife has been told several times I would not live until morning.

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@oldkarl. Wow, you are so organized! Good for you. I use those daily pill organizer even though I don't take as many pills as you do. I also set alarm and reminder on my phone. Medicine has come a long way. When my friend was born 72 years ago, the doctor told his mom "not to get too attached" because he was colicky. He was brought up in goats milk. You will prove the doctors wrong in a long time to come. Cheers to you.

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@oldkarl

@pfbacon Peggy, I do have my own system, but it takes a lot more time and is much more specific than most. I take about 15 different meds, so I have to be careful. Each time I get one filled, I make sure I know exactly how it is supposed to help me. To do that, I daily record: Mornings– Glucose readings with insulin dosages, thyroxine tab, Methotrexate on Monday, blood pressure, temperature, protein foam on the urine, any blood in urine, weight, acetaminophen, any unusual pain, At noon record just the GL and insulin, acetaminophen and pain . Before dinner, acetaminophen PM. Bedtime: the BP readings, GL daily readings plus averages for today, last seven days, last 30 days, last 90 days. And more over the counter stuff. Most of my heart meds I take at bedtime. Works better, and will not counteract the levothyroxine or other meds. And every day I spend a few minutes or an hour adding to my internet record at https://bit.Ly/2jtypp9, available to anyone. During the time I am working on it I try to image what each med impacts, and whether or not it is helping. I gave up on gabapentin and several heart meds because they had no impact on me. And I moved meds around to make sure I was taking them properly. Anyway, it takes about an hour to 1 1/2 to get up and showered and dressed each morning, plus time to sort pills into trays each week, plus re-order meds, supplies, check appointments, etc. But I am still ahead of the game. When I was born 80 years ago, the doc told my parents I would never see my third birthday because of my muscular dystrophy, and my wife has been told several times I would not live until morning.

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Thank you for replying. I will try harder to keep records. I have started several 'systems', then got behind or misplaced the piece of paper or notebook and abandoned them. But it looks like I must try something new. And, yes, a new pharmacy as well. Thank you all for your advice. I will check back here to see if more advice comes in – I have nothing to lose by trying almost everything. Peggy

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@pfbacon

Thank you for replying. I will try harder to keep records. I have started several 'systems', then got behind or misplaced the piece of paper or notebook and abandoned them. But it looks like I must try something new. And, yes, a new pharmacy as well. Thank you all for your advice. I will check back here to see if more advice comes in – I have nothing to lose by trying almost everything. Peggy

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@pfbacon I was given the wrong medication. It was a new one, with a long name, and I didn't register what the psychiatrist was prescribing, so neither my wife nor I caught it. I took it for a month, and during that time I had an appointment with the neurologist, who saw walk through the lobby, and told his nurse, "That man has Parkinson's." That's how that medication affected me, but I didn't realize it. He tested me for Parkinson's right then, but all he could say that day was that I had the classic symptoms.

At my next appointment with the psychiatrist he asked how the medicine was going, and he said the name of it, and my wife showed him the prescription bottle and he hit the roof! He also said that it wasn't the first time it had happened with that pharmacy.

I filed a lawsuit, and the jury awarded me a pittance, mainly because I was told that I couldn't say anything about certain important things. The doctors who testified and the lawyers cancelled their fees. After I left the courtroom I was lying, curled up in a ball on a bench, crying. That may have been the reason the lawyers were so kind. I was still recovering from multiple suicide attempts at that time.

Obviously I never used that pharmacy again. Now, my doctors send e-prescriptions to the pharmacy, and that kind of messup hasn't happened again. Unless I need something right away, my scripts go to a mail order pharmacy, who have been a big help keeping me on schedule with meds. I get an email when it's time for a refill, and they deal with the doctors for me when I'm out of refills, or get fresh prescriptions every month for the meds that are controlled substances. I used to be able to get a 90 day supply, but those days are long gone.

A letter of apology from the pharmacy would have been nice, or some sort of indication that the pharmacist had made a serious mistake.

Sorry. This isn't about how I stay on top of doctors and medications. I totally depend on Evernote and my calendar.

Jim

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What is Evernote? I'm glad you survived … Peggy

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@jimhd

@pfbacon I was given the wrong medication. It was a new one, with a long name, and I didn't register what the psychiatrist was prescribing, so neither my wife nor I caught it. I took it for a month, and during that time I had an appointment with the neurologist, who saw walk through the lobby, and told his nurse, "That man has Parkinson's." That's how that medication affected me, but I didn't realize it. He tested me for Parkinson's right then, but all he could say that day was that I had the classic symptoms.

At my next appointment with the psychiatrist he asked how the medicine was going, and he said the name of it, and my wife showed him the prescription bottle and he hit the roof! He also said that it wasn't the first time it had happened with that pharmacy.

I filed a lawsuit, and the jury awarded me a pittance, mainly because I was told that I couldn't say anything about certain important things. The doctors who testified and the lawyers cancelled their fees. After I left the courtroom I was lying, curled up in a ball on a bench, crying. That may have been the reason the lawyers were so kind. I was still recovering from multiple suicide attempts at that time.

Obviously I never used that pharmacy again. Now, my doctors send e-prescriptions to the pharmacy, and that kind of messup hasn't happened again. Unless I need something right away, my scripts go to a mail order pharmacy, who have been a big help keeping me on schedule with meds. I get an email when it's time for a refill, and they deal with the doctors for me when I'm out of refills, or get fresh prescriptions every month for the meds that are controlled substances. I used to be able to get a 90 day supply, but those days are long gone.

A letter of apology from the pharmacy would have been nice, or some sort of indication that the pharmacist had made a serious mistake.

Sorry. This isn't about how I stay on top of doctors and medications. I totally depend on Evernote and my calendar.

Jim

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@jimhd I am so sorry, angry, and sad for what you endured. I am flabbergasted. You poor dear one. Love, Lori

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@jimhd

@pfbacon I was given the wrong medication. It was a new one, with a long name, and I didn't register what the psychiatrist was prescribing, so neither my wife nor I caught it. I took it for a month, and during that time I had an appointment with the neurologist, who saw walk through the lobby, and told his nurse, "That man has Parkinson's." That's how that medication affected me, but I didn't realize it. He tested me for Parkinson's right then, but all he could say that day was that I had the classic symptoms.

At my next appointment with the psychiatrist he asked how the medicine was going, and he said the name of it, and my wife showed him the prescription bottle and he hit the roof! He also said that it wasn't the first time it had happened with that pharmacy.

I filed a lawsuit, and the jury awarded me a pittance, mainly because I was told that I couldn't say anything about certain important things. The doctors who testified and the lawyers cancelled their fees. After I left the courtroom I was lying, curled up in a ball on a bench, crying. That may have been the reason the lawyers were so kind. I was still recovering from multiple suicide attempts at that time.

Obviously I never used that pharmacy again. Now, my doctors send e-prescriptions to the pharmacy, and that kind of messup hasn't happened again. Unless I need something right away, my scripts go to a mail order pharmacy, who have been a big help keeping me on schedule with meds. I get an email when it's time for a refill, and they deal with the doctors for me when I'm out of refills, or get fresh prescriptions every month for the meds that are controlled substances. I used to be able to get a 90 day supply, but those days are long gone.

A letter of apology from the pharmacy would have been nice, or some sort of indication that the pharmacist had made a serious mistake.

Sorry. This isn't about how I stay on top of doctors and medications. I totally depend on Evernote and my calendar.

Jim

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Jim, what an ordeal, and what a weird and awful experience! One thing I didn't understand, what did you mean when you said "I was told that I couldn't say anything about certain important things". Just curious, no need to answer if it's something personal. Best, Hank

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@pfbacon

I just found out why I've been feeling more pain … I picked up my rx for gabapentin at the usual pharmacy but it looked different – it's a large white tablet, it's usually a yellow-beige capsule. I asked the pharmacist why it looks different — she read the labels and said that it's 600 mg, the other is 400 mg. My doctor changed my rx to 600 mg months ago and sent the rx to the pharmacy but they kept filling the old rx until it ran out without asking me or the doctor if they were supposed to discontinue the old one and start the new one right away. The old rx just ran out so they finally filled the new one — perhaps I will feel less pain in a day or two. Do any of you have a good system for staying on top of your medications, doctors, appointments, and pharmacists? Something that's portable, easy to update, easy to read … ? Peggy

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@pfbacon I think the idea is to watch them like a hawk. Your own awareness is what is so important. What is so scarey is the people who have no capacity for watching their own meds at all. I think it's good to have a spouse, friend…to also watch your meds, and double check that things are right. I hope your correct dose helps!! Lori

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@jesfactsmon

Jim, what an ordeal, and what a weird and awful experience! One thing I didn't understand, what did you mean when you said "I was told that I couldn't say anything about certain important things". Just curious, no need to answer if it's something personal. Best, Hank

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@jesfactsmon
By looking at your @ jes…name I understand that you like to know the facts.

I don't remember what I wasn't allowed to say. It had to do with details of the case. I think there were 3 things that the attorneys stipulated could not be said to the jury. I just can't remember what they were. At the trial it was kind of strange. I was asked only a few introductory questions, and then I spent 15 or 20 minutes explaining what happened. My neurologist had recorded what he saw, and it was played for the jury. My therapist drove to Portland, where the trial was held, and made a statement.

The prescription was an antidepressant, and I was given some other psychotropic medication, something that used to be given to people in mental institutions, to sedate the difficult patients. I can't imagine what the pharmacist was thinking, prescribing such a medication. I would think that he knew what he was giving me, and one would think that he would have warned me about the risks associated with it.

Oh well. I survived. I read the entire information paperwork for a new medication, and I usually read it for meds I've been taking for years. Plus I check online for interactions every few months.

Live and learn.

Jim

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@jimhd

@jesfactsmon
By looking at your @ jes…name I understand that you like to know the facts.

I don't remember what I wasn't allowed to say. It had to do with details of the case. I think there were 3 things that the attorneys stipulated could not be said to the jury. I just can't remember what they were. At the trial it was kind of strange. I was asked only a few introductory questions, and then I spent 15 or 20 minutes explaining what happened. My neurologist had recorded what he saw, and it was played for the jury. My therapist drove to Portland, where the trial was held, and made a statement.

The prescription was an antidepressant, and I was given some other psychotropic medication, something that used to be given to people in mental institutions, to sedate the difficult patients. I can't imagine what the pharmacist was thinking, prescribing such a medication. I would think that he knew what he was giving me, and one would think that he would have warned me about the risks associated with it.

Oh well. I survived. I read the entire information paperwork for a new medication, and I usually read it for meds I've been taking for years. Plus I check online for interactions every few months.

Live and learn.

Jim

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I'm with Lori, everyone should have another person who can double-check those medications. Unfortunately we come into this life alone and sometimes are unlucky enough not to have such a person when we need it. I hope this doesn't ever happen again to you. BTW Jim, we lived in Portland for 28 years until 2006. We met and married there but had to leave for a bunch of reasons unrelated to the location. I miss the Pacific NW and especially the Columbia Gorge where I used to love to hike. Best, Hank

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