I apologize if this is a duplicate of anything previously discussed. I have been getting diagnostic stuff done & prep for beginning chemo for a second cancer with mets, so been a bit busy. I finally got a beginning treatment plan, unfortunately after learning that things are not looking as good as we had hoped. One of the chemo drugs has a side effect of PN, which I have now from a previous cancer drug. Obviously, I am pretty concerned about that because, if I cannot tolerate these drugs, my options will be even more limited. In a group that I am in, I was told about a previous study where IV magnesium and Calcium given during chemo really helps reduce the incidence of PN. I am still doing some research on this, so do not know if this combination is relevant in existing PN or when taken orally. Bottom line, it might be worth looking in to. If anyone has had any experience with it, please share. I want the best shot at managing the 3 chemo drugs I will be on. My husband goes to a doctor who also specializes in supplements - has his own brand that he makes in house. I plan to make an appointment if this is something that he is familiar with. My husband will see him on Monday and ask; if I hear anything significant (positive or negative) I will certainly share.
Did you do physical therapy? So sorry for your pain and hope you can find a<br />
resolution soon.<br />
<br />
<br />
<br />
<br />
<br />
The things we take for granted, others are praying for!<br />
<br />
<br />
<br />
Did you do physical therapy? So sorry for your pain and hope you can find a<br />
resolution soon.<br />
<br />
<br />
<br />
<br />
<br />
The things we take for granted, others are praying for!<br />
<br />
<br />
<br />
I apologize if this is a duplicate of anything previously discussed. I have been getting diagnostic stuff done & prep for beginning chemo for a second cancer with mets, so been a bit busy. I finally got a beginning treatment plan, unfortunately after learning that things are not looking as good as we had hoped. One of the chemo drugs has a side effect of PN, which I have now from a previous cancer drug. Obviously, I am pretty concerned about that because, if I cannot tolerate these drugs, my options will be even more limited. In a group that I am in, I was told about a previous study where IV magnesium and Calcium given during chemo really helps reduce the incidence of PN. I am still doing some research on this, so do not know if this combination is relevant in existing PN or when taken orally. Bottom line, it might be worth looking in to. If anyone has had any experience with it, please share. I want the best shot at managing the 3 chemo drugs I will be on. My husband goes to a doctor who also specializes in supplements - has his own brand that he makes in house. I plan to make an appointment if this is something that he is familiar with. My husband will see him on Monday and ask; if I hear anything significant (positive or negative) I will certainly share.
Martin thank you for an excellent overview of chemo and pn I think that the suggestions will help many of us and I intend to do some research on your info. Please keep us updated on any info you may find and I'll do the same. And I hope that all goes well for you. I'm sure you will be in all of our prayers.<br />
<br />
My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can't do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)
My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can't do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)
Welcome to Connect @thehubbytodd
I moved your message to this discussion thread about neuropathy so you could connect with @rabbit10@johnwburns@bobsconnect@grandma41@johnbishop and everyone else talking here. They know first-hand what it is like to live with neuropathy and may be able to offer some thoughts and advice.
My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can't do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)
briansr here. I have neuropathy from toes working its way up. You may have<br />
just opened my eyes to why both knees and one hip will keep me awake all<br />
night. Ice, temp., helps my knees but the best drug wise is gabapentin,<br />
800mg four a day but it's not enough. My drug company has a limit on how<br />
much they will allow. Twenty years ago I had a pain doc that had people on<br />
10,000 mgs a day and no need for any narcotics, boy he was right too!!<br />
My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can't do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)
Sorry to hear about your wife's troubles. My neuropathy is serious but nothing on that scale. You say its inflammatory so has there been a primary diagnosis of something like Lupus or Sjogren's, or another connective tissue disorder? Sounds like your wife is on the usual pain meds, the only one that I didn't see listed was an antidepressant, usually duloxetine. I'm pretty sure that opioids can be used for neuropathic pain with the usual warnings about addiction, but addiction worries sound secondary to comforting her at this point. My 2 cents. Here's a finding about that: http://www.ncbi.nlm.nih.gov/pubmed/23986501
Duloxetine or another antidepressant may help. Pain is not an exact science so don't give up hope. Best of luck to you and your wife.
My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can't do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)
Todd, I forgot to add that cell cert can take at least 6 months to work. I just started it a week ago. If your wife hasn't been on it long, she may hopefully still benefit. Again, good luck.
@johnbishop :Thank you for the information on the "Wahls Protocol". I ordered a copy, cant wait. I look up Dr. Terry Wahls, what an testamony. I belive more than people can benifit from what she has researched in the integrative approch to healing chronic autoimmune conditions. I also think if someone is suffering with a sickness is to find purpose in something, and I think these post give many a type of purpose in helping each other. I thank you so very much, my purpose will be in studing this book, puting it into action, and sharing it whith others. Thanks Salena54
Connect
Connect
Like
Helpful
Hug
I apologize if this is a duplicate of anything previously discussed. I have been getting diagnostic stuff done & prep for beginning chemo for a second cancer with mets, so been a bit busy. I finally got a beginning treatment plan, unfortunately after learning that things are not looking as good as we had hoped. One of the chemo drugs has a side effect of PN, which I have now from a previous cancer drug. Obviously, I am pretty concerned about that because, if I cannot tolerate these drugs, my options will be even more limited. In a group that I am in, I was told about a previous study where IV magnesium and Calcium given during chemo really helps reduce the incidence of PN. I am still doing some research on this, so do not know if this combination is relevant in existing PN or when taken orally. Bottom line, it might be worth looking in to. If anyone has had any experience with it, please share. I want the best shot at managing the 3 chemo drugs I will be on. My husband goes to a doctor who also specializes in supplements - has his own brand that he makes in house. I plan to make an appointment if this is something that he is familiar with. My husband will see him on Monday and ask; if I hear anything significant (positive or negative) I will certainly share.
Did you do physical therapy? So sorry for your pain and hope you can find a<br />
resolution soon.<br />
<br />
<br />
<br />
<br />
<br />
The things we take for granted, others are praying for!<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
Martin thank you for an excellent overview of chemo and pn I think that the suggestions will help many of us and I intend to do some research on your info. Please keep us updated on any info you may find and I'll do the same. And I hope that all goes well for you. I'm sure you will be in all of our prayers.<br />
<br />
-
Like -
Helpful -
Hug
1 ReactionMy Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can't do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)
Welcome to Connect @thehubbytodd
I moved your message to this discussion thread about neuropathy so you could connect with @rabbit10 @johnwburns @bobsconnect @grandma41 @johnbishop and everyone else talking here. They know first-hand what it is like to live with neuropathy and may be able to offer some thoughts and advice.
briansr here. I have neuropathy from toes working its way up. You may have<br />
just opened my eyes to why both knees and one hip will keep me awake all<br />
night. Ice, temp., helps my knees but the best drug wise is gabapentin,<br />
800mg four a day but it's not enough. My drug company has a limit on how<br />
much they will allow. Twenty years ago I had a pain doc that had people on<br />
10,000 mgs a day and no need for any narcotics, boy he was right too!!<br />
-
Like -
Helpful -
Hug
1 ReactionSorry to hear about your wife's troubles. My neuropathy is serious but nothing on that scale. You say its inflammatory so has there been a primary diagnosis of something like Lupus or Sjogren's, or another connective tissue disorder? Sounds like your wife is on the usual pain meds, the only one that I didn't see listed was an antidepressant, usually duloxetine. I'm pretty sure that opioids can be used for neuropathic pain with the usual warnings about addiction, but addiction worries sound secondary to comforting her at this point. My 2 cents. Here's a finding about that: http://www.ncbi.nlm.nih.gov/pubmed/23986501
Duloxetine or another antidepressant may help. Pain is not an exact science so don't give up hope. Best of luck to you and your wife.
-
Like -
Helpful -
Hug
2 ReactionsTodd, I forgot to add that cell cert can take at least 6 months to work. I just started it a week ago. If your wife hasn't been on it long, she may hopefully still benefit. Again, good luck.
-
Like -
Helpful -
Hug
1 Reaction@johnbishop :Thank you for the information on the "Wahls Protocol". I ordered a copy, cant wait. I look up Dr. Terry Wahls, what an testamony. I belive more than people can benifit from what she has researched in the integrative approch to healing chronic autoimmune conditions. I also think if someone is suffering with a sickness is to find purpose in something, and I think these post give many a type of purpose in helping each other. I thank you so very much, my purpose will be in studing this book, puting it into action, and sharing it whith others. Thanks Salena54
-
Like -
Helpful -
Hug
1 Reaction