Hi John,You posted in a September 10 response a link of some kind. I have tried a number of times to access that link and all I get is "no page found"
Arnrob
The link does not work with the bookmark part in the address. Just click on the link and when the URL comes up, delete everything after the number, i.e. from bookmark on and then click to load that address and you will get to the page the link is for.
Hi Paul @paulfj067 , I agree with you but it's just my opinion and I have no medical background or training. Also, I only have numbness with my PN. I found something that works for me and has worked for others who also have pain with their PN. I don't know if it will work for you but it's an alternative to drugs. I decided to try it after a lot of research on my own and also the fact there are no drugs or topicals that work to get rid of numbness, I've tried them all. Drugs do nothing to fix or repair damaged nerves which is the cause of the pain and numbness. The drugs just block or mask the pain in your brain so you don't feel it and they come with some major side effects. You can read my story here if you want to give it a try:
John this is the post with the link that does not work. As I said in my other post, just delete everything from bookmark until the end and it will work.
@nikkig -
You might want to consider being tested for gluten issues. If you have gluten intolerance or celiac disease, it causes malabsorption and that could be contributing to a Vitamin B deficiency. Stress also can cause gluten problems to start. This happened to me with the stress of going through my first surgery, and within a year the gluten in grains caused a leaky gut due to inflammation which created a lot of other food allergies that I live with. I had to figure things out with an elimination diet because at the time years ago. no doctor would listen to me or test me for gluten intolerance and I was told that I couldn't have this because I looked too good (not being emaciated from long term malabsorption). Stopping that and other foods that cause allergies helped a lot, and I get pretty sick if I have accidental exposure. Avoiding all my food issues stopped my unexplained pain. Here is some information. https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
Was tested with celiac, with a negative result. I can barely eat anything right now, partly due to being off my meds and partly because food is intolerable at this point. They gave me Lizness, but that is it. I am having an endoscopy/colonoscopy on Monday, then a gastroemptying test. I am also scheduled to see a neurologist. Trying to take it one day at a time. It's scary. I went from fine to being very, very ill.
John this is the post with the link that does not work. As I said in my other post, just delete everything from bookmark until the end and it will work.
Thanks @arnrob and @johnhans -- not sure why but the link worked for me when I tried it. We have been some issues with bookmarks recently after an update so I changed the link to use the page/comment reference so that it should work now. I changed it to the following which takes you to my story of how I found what works for me for PN:
Hi Old Karl @oldkarl -- I thought about you when I received an email update from the Foundation for Peripheral Neuropathy and read the following info in one of the headings:
"On August 10, the FDA said it had approved patisiran (Onpattro) to treat polyneuropathy associated with hereditary transthyretin (hATTR) amyloidosis, caused by a gene mutation that leads to amyloid deposits in nerves and tissues.
In the phase III APOLLO trial, patisiran slowed peripheral neuropathy progression in patients with hATTR amyloidosis, improving neurological impairment and clinical manifestation by over 18 months."
@steeldove - I am so sorry for all the people, and their pain, I read about here. I do agree that for some of us the pain gets worse in the evening and night and that sticking to a schedule of meds helps... and the heating pad. Yesterday I made the mistake of having an MRI in late afternoon - should have taken the meds before - you can't lie still for an MRI of your lower back when the restless leg gets going. I love what @mlmcg says - "May your tomorrows be better than your todays".
@barbarn Ouch! I have to admit that I laughed when I read about your late afternoon MRI, because I, too, did the same thing several years. My entire spine is very, very arthritic, and lying flat on my back on a hard surface is really painful, so there I was in the MRI for 90 minutes. The MRI operator kept saying, "Stop moving!" I can laugh about it now, but I sure didn't laugh back then...
@barbarn Ouch! I have to admit that I laughed when I read about your late afternoon MRI, because I, too, did the same thing several years. My entire spine is very, very arthritic, and lying flat on my back on a hard surface is really painful, so there I was in the MRI for 90 minutes. The MRI operator kept saying, "Stop moving!" I can laugh about it now, but I sure didn't laugh back then...
@steeldove Oh, my. I did the same thing at Phoenix Samaritan several times. No one bothered to tell me it would be a problem. But with my stenosis and crushed disks and some other stuff, I made as long as I could, but finally they just had to stop. Oh, my, that hurt.
Hi Old Karl @oldkarl -- I thought about you when I received an email update from the Foundation for Peripheral Neuropathy and read the following info in one of the headings:
"On August 10, the FDA said it had approved patisiran (Onpattro) to treat polyneuropathy associated with hereditary transthyretin (hATTR) amyloidosis, caused by a gene mutation that leads to amyloid deposits in nerves and tissues.
In the phase III APOLLO trial, patisiran slowed peripheral neuropathy progression in patients with hATTR amyloidosis, improving neurological impairment and clinical manifestation by over 18 months."
@johnbishop Thanks for the thought, John. I am quite familiar with patisiran, but rather skittish at the moment. mayo says I have no TTR in my Amyloidosis. Patisiran apparently does not work, as yet, for non-TTR. I suspect it may be improved in the future. Right now I could try it, but I would have to pay for it all myself. At $450,000 per month, that is a little more than I can stomach. Alnylam and I have been talking about it for several months. I think it is a great product.
Hi Old Karl @oldkarl -- I thought about you when I received an email update from the Foundation for Peripheral Neuropathy and read the following info in one of the headings:
"On August 10, the FDA said it had approved patisiran (Onpattro) to treat polyneuropathy associated with hereditary transthyretin (hATTR) amyloidosis, caused by a gene mutation that leads to amyloid deposits in nerves and tissues.
In the phase III APOLLO trial, patisiran slowed peripheral neuropathy progression in patients with hATTR amyloidosis, improving neurological impairment and clinical manifestation by over 18 months."
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The link does not work with the bookmark part in the address. Just click on the link and when the URL comes up, delete everything after the number, i.e. from bookmark on and then click to load that address and you will get to the page the link is for.
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1 ReactionJohn this is the post with the link that does not work. As I said in my other post, just delete everything from bookmark until the end and it will work.
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Helpful -
Hug
1 ReactionWas tested with celiac, with a negative result. I can barely eat anything right now, partly due to being off my meds and partly because food is intolerable at this point. They gave me Lizness, but that is it. I am having an endoscopy/colonoscopy on Monday, then a gastroemptying test. I am also scheduled to see a neurologist. Trying to take it one day at a time. It's scary. I went from fine to being very, very ill.
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Like -
Helpful -
Hug
1 ReactionThanks @arnrob and @johnhans -- not sure why but the link worked for me when I tried it. We have been some issues with bookmarks recently after an update so I changed the link to use the page/comment reference so that it should work now. I changed it to the following which takes you to my story of how I found what works for me for PN:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
Hope this helps.
John
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1 ReactionHi Old Karl @oldkarl -- I thought about you when I received an email update from the Foundation for Peripheral Neuropathy and read the following info in one of the headings:
"On August 10, the FDA said it had approved patisiran (Onpattro) to treat polyneuropathy associated with hereditary transthyretin (hATTR) amyloidosis, caused by a gene mutation that leads to amyloid deposits in nerves and tissues.
In the phase III APOLLO trial, patisiran slowed peripheral neuropathy progression in patients with hATTR amyloidosis, improving neurological impairment and clinical manifestation by over 18 months."
The email had the following link to more info:
Patisiran Wins Two Firsts With FDA Approval -- RNAi drug OK'd to treat polyneuropathy from hereditary transthyretin amyloidosis
-- https://www.medpagetoday.com/neurology/generalneurology/74525?utm_source=E-News+-+September+2018&utm_campaign=E-News+-+September+2018&utm_medium=email
John
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1 Reaction@jjwest ** Thanks for the tip. I just added Tylenol Arthritis to my shopping list.
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1 Reaction@barbarn Ouch! I have to admit that I laughed when I read about your late afternoon MRI, because I, too, did the same thing several years. My entire spine is very, very arthritic, and lying flat on my back on a hard surface is really painful, so there I was in the MRI for 90 minutes. The MRI operator kept saying, "Stop moving!" I can laugh about it now, but I sure didn't laugh back then...
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Helpful -
Hug
1 Reaction@steeldove Oh, my. I did the same thing at Phoenix Samaritan several times. No one bothered to tell me it would be a problem. But with my stenosis and crushed disks and some other stuff, I made as long as I could, but finally they just had to stop. Oh, my, that hurt.
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2 Reactions@johnbishop Thanks for the thought, John. I am quite familiar with patisiran, but rather skittish at the moment. mayo says I have no TTR in my Amyloidosis. Patisiran apparently does not work, as yet, for non-TTR. I suspect it may be improved in the future. Right now I could try it, but I would have to pay for it all myself. At $450,000 per month, that is a little more than I can stomach. Alnylam and I have been talking about it for several months. I think it is a great product.
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Hug
1 Reaction@johnbishop Thank you, John, for that interesting/scary article. Scary because I know I have another genetic glitch that originates in my liver.
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