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

Posted by da20pilot @da20pilot, Feb 13, 2020

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

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.

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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.

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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.

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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.

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@darlingtondoll

They never detected it on my urine test.

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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

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@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

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@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.

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Thanks so much for the info greatly appreciated

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@lorirenee1

@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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Hey everyone – I received my medical marijuana card in hopes that it would take care of my pain and reduce my need for hydrocodone. Unfortunately, it was not as great as I had hoped for. My pain level equated to extra strength THC and as I crept up the dosing chart to find relief, it made me completely unable to function. I don't get that from opiods therefore, opiods win out for me. Now this is not what any Dr or our government wants to hear but too bad, it's a fact for some. My Mom for example…41 year chronic pain suffer from a motorcycle accident and on opiods to live somewhat of a less dysfunctional life. There are legit reasons for people to need certain drugs because other drugs or techniques dont work.Whoever brought up the point earlier about diabetics needing insulin….great point. Sometimes, it is what it is.

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@lorirenee1

@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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I know. This is crazy. 150 for my card he tells me he'll treat me then the next visit he says he won't. Unbelievable.

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@darlingtondoll

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.

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I had a motorcycle are used to drive everywhere and I had to sell it because of my problems so I understand you losing the flying it’s hard to lose things we love

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@da20pilot

I know. This is crazy. 150 for my card he tells me he'll treat me then the next visit he says he won't. Unbelievable.

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@da20pilot AllI can say is Grrrr.

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@rwinney

Hey everyone – I received my medical marijuana card in hopes that it would take care of my pain and reduce my need for hydrocodone. Unfortunately, it was not as great as I had hoped for. My pain level equated to extra strength THC and as I crept up the dosing chart to find relief, it made me completely unable to function. I don't get that from opiods therefore, opiods win out for me. Now this is not what any Dr or our government wants to hear but too bad, it's a fact for some. My Mom for example…41 year chronic pain suffer from a motorcycle accident and on opiods to live somewhat of a less dysfunctional life. There are legit reasons for people to need certain drugs because other drugs or techniques dont work.Whoever brought up the point earlier about diabetics needing insulin….great point. Sometimes, it is what it is.

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@rwinney Hi Rachel! Even though the marijuana made it hard for you to function, you might want to try different strains of it. I absolutely know what you are talking about. The amount you need to not feel pain, makes you unable to function. I have that also, but am learning to pick and choose which kind and how much to take of that kind. I choose from chocolate, gummies, the plant itself, and a vape. The edible things give a very strong high, but if I am in excruciating pain, I take them, or Kratom. I am so happy you have a doctor that gives you the hydrocodone you need, especially if you find you really can't do the marijuana. Oddly, I am learning to live feeling a bit high. It beats PAIN!!!! However, down the line, I will probably do the Dorsal Root Ganglion Stimulator trial. I do think it will come to that. Meanwhile, I have not had pain for almost 3 days, which has left me utterly perplexed. Tonite, I can feel mild pain again. What an illness. Just what an illness. Lori Renee

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@lorirenee1

@rwinney Hi Rachel! Even though the marijuana made it hard for you to function, you might want to try different strains of it. I absolutely know what you are talking about. The amount you need to not feel pain, makes you unable to function. I have that also, but am learning to pick and choose which kind and how much to take of that kind. I choose from chocolate, gummies, the plant itself, and a vape. The edible things give a very strong high, but if I am in excruciating pain, I take them, or Kratom. I am so happy you have a doctor that gives you the hydrocodone you need, especially if you find you really can't do the marijuana. Oddly, I am learning to live feeling a bit high. It beats PAIN!!!! However, down the line, I will probably do the Dorsal Root Ganglion Stimulator trial. I do think it will come to that. Meanwhile, I have not had pain for almost 3 days, which has left me utterly perplexed. Tonite, I can feel mild pain again. What an illness. Just what an illness. Lori Renee

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Yayyy! Take the better days for all their worth my dear and keep riding the wave. Best to you.
Rachel

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