Confused: test didn't detect neuropathy, but many symptoms

Posted by da20pilot @da20pilot, Feb 13 10:33am

Hi
Judging from the other posts I am not alone and extremely disappointed with the current health care i am receiving. I was given a chemo pill and got some form of neuropathy. I was a daily drinker at the time as well had a fair amount of anxiety and on and off hypothyroidism. Fell into a depressed state for many years. Was given opioids for the last 12 years to treat what I would call severe pain in my feet legs and hands and life was bearable. I fall down constantly. My doctor took a position in a hospital so I was referred to a pain clinic Now they wont give me the opioids to me because a nerve test couldn’t detect neuropathy. The current doctor had me convinced I didn’t need them so I started taking less. I can barely walk. The burning has moved to my chest. I haven’t slept in days. It feels like I’m standing barefoot on ice. My legs feel like I ran a marathon the day before and the cramping after a short walk is unbearable. I cant believe they expect me to live like this. I at a total loss. Any thoughts would be appreciated.

@da20pilot

Thanks again. I will try your suggestions. My experience with the massage is although it offers relief it seems to come back worse but will try again. The others you mentioned I have not try and will give it a shot. I did get some cream off of Amazon but it's short lived and expensive.

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I agree with you regarding massage and even myofascial release and physical therapy. I have never been one to speak up. Kind of like what @jimhd said about his wife not being honest about her pain. I rolled with the "no pain, no gain" theory and paid the price as a result. As I mentioned before…self awareness and discovery is ever evolving.

I want to also add that you really got me. I will be celebrating my 30th wedding anniversary this year. I'm truly very sorry for your situation which adds insult to injury. I greatly hope that you and your children will find a way to work through adversity in order to find peace and healing.

Rachel

REPLY
@jimhd

@da20pilot

I've started looking at doctor reviews before making an appointment. Vitals.com googlescholars.com and LifeScripts.com. Not every doctor is listed, but it's helped me with selecting one. What specialty is the doctor who diagnosed neuropathy? I would find a neurologist who has good reviews, and if it's possible, talk with people who have been seeing a neurologist. It's clear that something is going on.

Do you have numbness anywhere? What causes your falls? What were the first signs you experienced that caused you to see the doctor? I'm asking these things to satisfy my own curiosity, but they're the kind of questions you should be hearing from your doctor. If a doctor ever recommends that you meet with a psychiatrist (because they think it's all in your head), go looking for a better doctor who hears and believes what you're saying.

Welcome to the "opioid medication for pain control club". My pcp prescribed morphine sulfate contin for me for pain six years ago, and last year, suddenly he went from prescribing morphine specifically for long term pain control, to the party line that says "opioids are not for pain". So, I have to wonder if he was lying to me 6 years ago or lying last year. I don't buy the politically driven about face on the subject of pain meds. It angers me that we who have been taking opioids long term, and doing so responsibly and taking them as prescribed, all of a sudden are denied the only medication that has been efficacious, when we have tried every other medication and nothing relieved our pain except an opioid. There has to be a solution to the opioid scare that controls the abuse without making us the bad guy who pays the price for illegal drug use by denying us access to the medication we need. By "need" I'm not implying addiction. Insulin is freely available to diabetics. They need it, but no one would accuse them of being addicted. NSAIDs are bought OTC for arthritis and other inflammatory issues, without government interference. So, opioids have been used for centuries to treat pain, but now our illustrious bureaucrats think that it doesn't actually treat pain – it only mixes the signal to our brains and fools us into thinking that we don't have pain. It's a bunch of you know what.

Climbing off the soap box.

I've read numerous posts here at Mayo Connect about seeing an internist. I've never seen one, but it might be helpful for you to see one. If you do find an internist, I would advise you to ask if you'll be talking with the doctor or an assistant. I'm tired of taking a big chunk of my day, only to discover that the person who sees me is not much more than a messenger for the doctor. Two years ago I had a spinal cord stimulator implant, and the only time I ever met the surgeon was in the surgery prep cubicle. I will never see him again. I should write a review on one of those websites that I mentioned.

Keep pushing forward. Speak up! If your pain is disabling, be sure that doctors know that. I get frustrated when I'm with my wife at an appointment with a doctor and she downplays her pain. I will speak up and tell him that she sits in the recliner all the time because she's in too much pain to get up and do anything. Self advocacy is very important. If it's hard to admit to the doctor how much pain you're having, ask someone to go with you who knows what you're going through and will be able to support you by being pushy on your behalf.

I hope you'll find help soon.

Jim

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Hi Jim
Great insight. My feet and hands r numb. Yet they burn like well standing barefoot on ice. When on opioids my hands or fair but are bad without. I fall mostly on the steps and in the shower. I assume its from looking up to down or vise versa as that is a test I had to do during my medical to get and keep my pilot's license. I loose my balance even standing still thu. I've broken ribs and toes falling. I've held onto the railing so hard it has flung me into the wall face first. I feel for your wife as I didn't get out of my adjustable bed for years and wouldn't have until my wife kicked me out. Get this I was diagnosed with a disease called polycythemia vera and put on a pill called hydroxyurea a chemo pill after I had a DVT blood clot. After 2 years this hit me like a brick the neuropathy I mean. Turns out I never needed it as I had secondary polycythemia and it resolved it self after I stopped working. Where I work had mold that caused severe copd so when I left a few year later the incurable polycythemia was gone. My hematologist diagnosed me when I went to see him and described my conditions. Burning numbness and pain in my legs. Trouble with balance and what I told him is all the sudden I became stupid. I couldn't concentrate. My pcp treated my for years then moved on to a hospital and sent me to a pain doc. After about 7 minutes over 3 appointments and a nerve test he told me I wasn't sick. Cut my opioids in half to take me off of them. I was in sever pain but thought it was from being inactive for years. Now that I've been on my own and up and around for months I realize it wasn't from being inactive it's what I was feeling before but worse. The new pain doc tells me the same bs so I started to cut my dose before he stopped them. Now I can barely walk. The burning has moved to my chest as well. I am lost and can't believe this is happening. Now that I've seen 2 pain doctors I worry no one will treat me.
I really appreciate your story and thoughts
Thank you.

REPLY
@rwinney

I agree with you regarding massage and even myofascial release and physical therapy. I have never been one to speak up. Kind of like what @jimhd said about his wife not being honest about her pain. I rolled with the "no pain, no gain" theory and paid the price as a result. As I mentioned before…self awareness and discovery is ever evolving.

I want to also add that you really got me. I will be celebrating my 30th wedding anniversary this year. I'm truly very sorry for your situation which adds insult to injury. I greatly hope that you and your children will find a way to work through adversity in order to find peace and healing.

Rachel

Jump to this post

Wow thanks.
I also never really complain but didn't do enough to help myself and I'm now paying the price. I always assumed everything was set in stone and was assured by my wife and doctor that things would be ok. Boy was I wrong.
Thanks so much for your response and health and happiness to you and yours.
Tom

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@lorirenee1

@da20pilot Hi. First, I am so sorry for all of your losses. Loss of health, wife, kids….horrible to cope with. I too, suffer from foot neuropathy, and have a few suggestions. First, get a medical marijuana card if legal in your state. Marijuana does seem to distance the pain. I do get high from it, but have learned to control how much I take, and that helps. Also, research Kratom, if it is legal in your state. It is essentially a tree that grows in many Asian countries, and the leaves are used to ward off pain. The stuff does work for pain, if you find the right leaf strain to take. These two things do help. God Bless, and hang in. Your post touched me. You have gone through way too much. Lori Renee

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Thanks so much. I did get a medical marijuana card and that's part of the problem now as no doctor will treat me because the are afraid to loose their lience. I thought I was doing myself good and was encouraged by family and friends to do so. It helps tremendously. So the last pain doc say give up your card and I'll treat you. After I call the state and gave up my expensive card he comes back and tells me he will no longer give my the meds I need. I'm so lost.
Thank you for your ideas though it is encouraging that what I was doing wasn't wrong.
Much love
Tom

REPLY
@jimhd

@da20pilot

I've started looking at doctor reviews before making an appointment. Vitals.com googlescholars.com and LifeScripts.com. Not every doctor is listed, but it's helped me with selecting one. What specialty is the doctor who diagnosed neuropathy? I would find a neurologist who has good reviews, and if it's possible, talk with people who have been seeing a neurologist. It's clear that something is going on.

Do you have numbness anywhere? What causes your falls? What were the first signs you experienced that caused you to see the doctor? I'm asking these things to satisfy my own curiosity, but they're the kind of questions you should be hearing from your doctor. If a doctor ever recommends that you meet with a psychiatrist (because they think it's all in your head), go looking for a better doctor who hears and believes what you're saying.

Welcome to the "opioid medication for pain control club". My pcp prescribed morphine sulfate contin for me for pain six years ago, and last year, suddenly he went from prescribing morphine specifically for long term pain control, to the party line that says "opioids are not for pain". So, I have to wonder if he was lying to me 6 years ago or lying last year. I don't buy the politically driven about face on the subject of pain meds. It angers me that we who have been taking opioids long term, and doing so responsibly and taking them as prescribed, all of a sudden are denied the only medication that has been efficacious, when we have tried every other medication and nothing relieved our pain except an opioid. There has to be a solution to the opioid scare that controls the abuse without making us the bad guy who pays the price for illegal drug use by denying us access to the medication we need. By "need" I'm not implying addiction. Insulin is freely available to diabetics. They need it, but no one would accuse them of being addicted. NSAIDs are bought OTC for arthritis and other inflammatory issues, without government interference. So, opioids have been used for centuries to treat pain, but now our illustrious bureaucrats think that it doesn't actually treat pain – it only mixes the signal to our brains and fools us into thinking that we don't have pain. It's a bunch of you know what.

Climbing off the soap box.

I've read numerous posts here at Mayo Connect about seeing an internist. I've never seen one, but it might be helpful for you to see one. If you do find an internist, I would advise you to ask if you'll be talking with the doctor or an assistant. I'm tired of taking a big chunk of my day, only to discover that the person who sees me is not much more than a messenger for the doctor. Two years ago I had a spinal cord stimulator implant, and the only time I ever met the surgeon was in the surgery prep cubicle. I will never see him again. I should write a review on one of those websites that I mentioned.

Keep pushing forward. Speak up! If your pain is disabling, be sure that doctors know that. I get frustrated when I'm with my wife at an appointment with a doctor and she downplays her pain. I will speak up and tell him that she sits in the recliner all the time because she's in too much pain to get up and do anything. Self advocacy is very important. If it's hard to admit to the doctor how much pain you're having, ask someone to go with you who knows what you're going through and will be able to support you by being pushy on your behalf.

I hope you'll find help soon.

Jim

Jump to this post

Jim I meant to ask how is your implant working. This is what the the current doctor wants to do to me. Some sort of magnetic field or something like that.
Thanks
Tom

REPLY

Happy Valentine’s Day everybody I hope it’s a very uneventful day for you when it comes to pain stuff may you feel some kind of love today

REPLY
@da20pilot

Thanks so much. I did get a medical marijuana card and that's part of the problem now as no doctor will treat me because the are afraid to loose their lience. I thought I was doing myself good and was encouraged by family and friends to do so. It helps tremendously. So the last pain doc say give up your card and I'll treat you. After I call the state and gave up my expensive card he comes back and tells me he will no longer give my the meds I need. I'm so lost.
Thank you for your ideas though it is encouraging that what I was doing wasn't wrong.
Much love
Tom

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I never tell any of my doctors that I use medical marijuana.

Liked by da20pilot

REPLY

Mine drug test I have no choice unfortunately

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@da20pilot

Mine drug test I have no choice unfortunately

Jump to this post

They never detected it on my urine test.

Liked by da20pilot

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@da20pilot

Hi Jim
Great insight. My feet and hands r numb. Yet they burn like well standing barefoot on ice. When on opioids my hands or fair but are bad without. I fall mostly on the steps and in the shower. I assume its from looking up to down or vise versa as that is a test I had to do during my medical to get and keep my pilot's license. I loose my balance even standing still thu. I've broken ribs and toes falling. I've held onto the railing so hard it has flung me into the wall face first. I feel for your wife as I didn't get out of my adjustable bed for years and wouldn't have until my wife kicked me out. Get this I was diagnosed with a disease called polycythemia vera and put on a pill called hydroxyurea a chemo pill after I had a DVT blood clot. After 2 years this hit me like a brick the neuropathy I mean. Turns out I never needed it as I had secondary polycythemia and it resolved it self after I stopped working. Where I work had mold that caused severe copd so when I left a few year later the incurable polycythemia was gone. My hematologist diagnosed me when I went to see him and described my conditions. Burning numbness and pain in my legs. Trouble with balance and what I told him is all the sudden I became stupid. I couldn't concentrate. My pcp treated my for years then moved on to a hospital and sent me to a pain doc. After about 7 minutes over 3 appointments and a nerve test he told me I wasn't sick. Cut my opioids in half to take me off of them. I was in sever pain but thought it was from being inactive for years. Now that I've been on my own and up and around for months I realize it wasn't from being inactive it's what I was feeling before but worse. The new pain doc tells me the same bs so I started to cut my dose before he stopped them. Now I can barely walk. The burning has moved to my chest as well. I am lost and can't believe this is happening. Now that I've seen 2 pain doctors I worry no one will treat me.
I really appreciate your story and thoughts
Thank you.

Jump to this post

Do you still fly? After I had a couple of strokes, I couldn’t get my pilots license. I was told that I could get a sports license which means that I can’t take anyone up with me. Now that I am paralyzed, I can’t use foot controls so I cannot fly anyway. My husband is a pilot, but he sold his twin engine plane so we are both grounded now.

Liked by rwinney

REPLY
@da20pilot

Hi Jim
Great insight. My feet and hands r numb. Yet they burn like well standing barefoot on ice. When on opioids my hands or fair but are bad without. I fall mostly on the steps and in the shower. I assume its from looking up to down or vise versa as that is a test I had to do during my medical to get and keep my pilot's license. I loose my balance even standing still thu. I've broken ribs and toes falling. I've held onto the railing so hard it has flung me into the wall face first. I feel for your wife as I didn't get out of my adjustable bed for years and wouldn't have until my wife kicked me out. Get this I was diagnosed with a disease called polycythemia vera and put on a pill called hydroxyurea a chemo pill after I had a DVT blood clot. After 2 years this hit me like a brick the neuropathy I mean. Turns out I never needed it as I had secondary polycythemia and it resolved it self after I stopped working. Where I work had mold that caused severe copd so when I left a few year later the incurable polycythemia was gone. My hematologist diagnosed me when I went to see him and described my conditions. Burning numbness and pain in my legs. Trouble with balance and what I told him is all the sudden I became stupid. I couldn't concentrate. My pcp treated my for years then moved on to a hospital and sent me to a pain doc. After about 7 minutes over 3 appointments and a nerve test he told me I wasn't sick. Cut my opioids in half to take me off of them. I was in sever pain but thought it was from being inactive for years. Now that I've been on my own and up and around for months I realize it wasn't from being inactive it's what I was feeling before but worse. The new pain doc tells me the same bs so I started to cut my dose before he stopped them. Now I can barely walk. The burning has moved to my chest as well. I am lost and can't believe this is happening. Now that I've seen 2 pain doctors I worry no one will treat me.
I really appreciate your story and thoughts
Thank you.

Jump to this post

About falling, I have no sense of balance, but if I look at my feet in the shower, then I have a better chance of knowing where they are. I fall a lot too, but I try to stay in my wheelchair except in the shower. We gutted our bathroom and had a walk in shower put in so that way, I can get my wheelchair up to a large stone bench and that has made it safer for me. I used to have one of those portable plastic benches, but when I would fall, the bench would fall with me and I would be stuck on the floor until my husband could rescue me.

Liked by rwinney

REPLY
@darlingtondoll

They never detected it on my urine test.

Jump to this post

Nice it bin 10 days for me I hope I pass

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@da20pilot

Thanks so much. I did get a medical marijuana card and that's part of the problem now as no doctor will treat me because the are afraid to loose their lience. I thought I was doing myself good and was encouraged by family and friends to do so. It helps tremendously. So the last pain doc say give up your card and I'll treat you. After I call the state and gave up my expensive card he comes back and tells me he will no longer give my the meds I need. I'm so lost.
Thank you for your ideas though it is encouraging that what I was doing wasn't wrong.
Much love
Tom

Jump to this post

@da20pilot It is amazing how different doctors can be. My pain doc recommended a medical marijuana card! He gave me all the forms I needed to fill out, where to mail, etc. Personally, I think you should get your card back, if you can. If it helped pain, you need it. Find a doc who will fill out the part that he needs to fill out, and get it again. I know you paid so much money for the first card, but it is money so well spent. I would even talk to a doctor before even seeing him, and ask if he will support your getting a card. God in heaven, you have been through way too much. Your life pulls on my heart strings. I will think about you, and hope that something helps. God bless you. Lori Renee

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@da20pilot

Jim I meant to ask how is your implant working. This is what the the current doctor wants to do to me. Some sort of magnetic field or something like that.
Thanks
Tom

Jump to this post

@da20pilot The stimulator worked well for the first year. Since then I have to get it calibrated every 3 months. I know it's still helping, but I also take morphine, imipramine, Meloxicam and acetaminophen for the pain. Most of the time I can manage the pain, but when I'm on my feet any length of time the pain goes up from its baseline of 2 to 6+. I'm having conversation with a stimulator specialist about changing to a dorsal root ganglion stimulator. I'm scheduled to get an adjustment on my scs on Monday, and 3 weeks later, after I can tell if the adjustment helped, I have an appointment with the specialist to see if there's anything else I can try before I get the drg implant.

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@jimhd

@da20pilot The stimulator worked well for the first year. Since then I have to get it calibrated every 3 months. I know it's still helping, but I also take morphine, imipramine, Meloxicam and acetaminophen for the pain. Most of the time I can manage the pain, but when I'm on my feet any length of time the pain goes up from its baseline of 2 to 6+. I'm having conversation with a stimulator specialist about changing to a dorsal root ganglion stimulator. I'm scheduled to get an adjustment on my scs on Monday, and 3 weeks later, after I can tell if the adjustment helped, I have an appointment with the specialist to see if there's anything else I can try before I get the drg implant.

Jump to this post

Thanks so much for the info greatly appreciated

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