I am told my issue is Polyneuropathy caused by an autoimmune condition that may be exacerbated by gluten. Treatment includes a gluten-free diet and Ivig. I have undergone the first, 3 day session of infusions. 5 more will follow, at 4 week intervals. At some point NCS will be performed to compare velocities/amplitudes to baseline values. Too early to comment on efficacy.( I will add that my first Neurologist conducted an NCS, concluding SFSN: Idiopathic, for which there is no treatment. I am glad I pursued a second opinion)
I am told my issue is Polyneuropathy caused by an autoimmune condition that may be exacerbated by gluten. Treatment includes a gluten-free diet and Ivig. I have undergone the first, 3 day session of infusions. 5 more will follow, at 4 week intervals. At some point NCS will be performed to compare velocities/amplitudes to baseline values. Too early to comment on efficacy.( I will add that my first Neurologist conducted an NCS, concluding SFSN: Idiopathic, for which there is no treatment. I am glad I pursued a second opinion)
@davehayward1 - Thanks for sharing what you've found out for your diagnosis. You may be interested in joining other members talking about polyneuropathy in the following discussion -- Axonal Sensorimotor Polyneuropathy: Looking for someone to relate: https://connect.mayoclinic.org/discussion/someone-to-relate/
Hoping you can provide another update after you've had a chance to evaluate whether or not it's helping you.
Yes, I'll take the 85-90% as very good. Just wish it hadn't given me neuropathy. Oncologist said it would probably go away. I read that it might take 3-5 months if it goes away, then maybe only partially. Luckily, I just have numbness on the bottoms of feet. My hands are doing better than my feet. Mostly just a little numbness in the morning hours. Still need to have the final surgery to get the permanent implants put in. I had breast cancer in my left breast 26 years ago. Seven years later I had implants put in both breasts. So since the left one is now 19 years old, plastic surgeon said it is best to replace it with a new one.
No, he just said it would go away. I'll be seeing his nurse practitioner in October for follow up. I guess if it doesn't get worse before then, I'll see what if anything can be given for the neuropathy. Right now I'm using a homeopathic rubbing oil for neuropathy called Frankincense Myrrh.
No, he just said it would go away. I'll be seeing his nurse practitioner in October for follow up. I guess if it doesn't get worse before then, I'll see what if anything can be given for the neuropathy. Right now I'm using a homeopathic rubbing oil for neuropathy called Frankincense Myrrh.
Sounds like a recipe from The Three Kings 😊.
Here is an excerpt from Healthline online: “ B vitamins are useful in treating neuropathy since they support healthy nervous system function. Peripheral neuropathy is sometimes caused by a vitamin B deficiency.”. I only take B12 but M considering adding on B1 and B6 after I talk to my doctor.
No, he just said it would go away. I'll be seeing his nurse practitioner in October for follow up. I guess if it doesn't get worse before then, I'll see what if anything can be given for the neuropathy. Right now I'm using a homeopathic rubbing oil for neuropathy called Frankincense Myrrh.
How is the oil working for you? Amazon is delivering mine today. I take pregabalin for the neuropathy cased by small fiber neuropathy. The treatment is still new to me so we playing with the dosage.
How is the oil working for you? Amazon is delivering mine today. I take pregabalin for the neuropathy cased by small fiber neuropathy. The treatment is still new to me so we playing with the dosage.
The neuropathy oil does seem to be helping. My feet don't seem to be feeling as hot at night like before using it. My oncologist didn't say what kind of neuropathy I have, except that it was brought on by the chemotherapy. Just grateful that it isn't as bad as some people with diabetes have. And the fact that there's a good chance of mine going away eventually. So I'll keep using the oil for now. And hopefully it doesn't get much worse. I think by now that it if it hasn't gotten worse, it has reached its peak as far as discomfort.
@davehayward1 - Thanks for sharing what you've found out for your diagnosis. You may be interested in joining other members talking about polyneuropathy in the following discussion -- Axonal Sensorimotor Polyneuropathy: Looking for someone to relate: https://connect.mayoclinic.org/discussion/someone-to-relate/
Hoping you can provide another update after you've had a chance to evaluate whether or not it's helping you.
Thanks for the link. I will most certainly keep this group updated as treatments progress. One thing I should mention is that my side effects were negligible during round #1 and, as I understand it, I can expect the same in future rounds
I had lumbar spinal stenosis surgery 8 mos. ago. Shortly thereafter I noticed some numbness & swelling in my feet. Recently it has increased and it has moved higher into my lower legs, I believe I have I have neuropathy now, I am very old, should I prepare for death now
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I am told my issue is Polyneuropathy caused by an autoimmune condition that may be exacerbated by gluten. Treatment includes a gluten-free diet and Ivig. I have undergone the first, 3 day session of infusions. 5 more will follow, at 4 week intervals. At some point NCS will be performed to compare velocities/amplitudes to baseline values. Too early to comment on efficacy.( I will add that my first Neurologist conducted an NCS, concluding SFSN: Idiopathic, for which there is no treatment. I am glad I pursued a second opinion)
@davehayward1 - Thanks for sharing what you've found out for your diagnosis. You may be interested in joining other members talking about polyneuropathy in the following discussion -- Axonal Sensorimotor Polyneuropathy: Looking for someone to relate: https://connect.mayoclinic.org/discussion/someone-to-relate/
Hoping you can provide another update after you've had a chance to evaluate whether or not it's helping you.
Has he talked to you about vitamin B’s.
No, he just said it would go away. I'll be seeing his nurse practitioner in October for follow up. I guess if it doesn't get worse before then, I'll see what if anything can be given for the neuropathy. Right now I'm using a homeopathic rubbing oil for neuropathy called Frankincense Myrrh.
I have and do take vitamin Super B-Complex everyday.
Sounds like a recipe from The Three Kings 😊.
Here is an excerpt from Healthline online: “ B vitamins are useful in treating neuropathy since they support healthy nervous system function. Peripheral neuropathy is sometimes caused by a vitamin B deficiency.”. I only take B12 but M considering adding on B1 and B6 after I talk to my doctor.
How is the oil working for you? Amazon is delivering mine today. I take pregabalin for the neuropathy cased by small fiber neuropathy. The treatment is still new to me so we playing with the dosage.
The neuropathy oil does seem to be helping. My feet don't seem to be feeling as hot at night like before using it. My oncologist didn't say what kind of neuropathy I have, except that it was brought on by the chemotherapy. Just grateful that it isn't as bad as some people with diabetes have. And the fact that there's a good chance of mine going away eventually. So I'll keep using the oil for now. And hopefully it doesn't get much worse. I think by now that it if it hasn't gotten worse, it has reached its peak as far as discomfort.
Thanks for the link. I will most certainly keep this group updated as treatments progress. One thing I should mention is that my side effects were negligible during round #1 and, as I understand it, I can expect the same in future rounds
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1 ReactionI had lumbar spinal stenosis surgery 8 mos. ago. Shortly thereafter I noticed some numbness & swelling in my feet. Recently it has increased and it has moved higher into my lower legs, I believe I have I have neuropathy now, I am very old, should I prepare for death now