rabbit10
@rabbit10
@rabbit10
Posts: 36
Joined: Apr 07, 2016
Anyone here dealing with peripheral neuropathy?
Anyone here dealing with peripheral neuropathy?
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steeldove
@steeldove
@steeldove
Posts: 147
Joined: Jul 31, 2017
@barbarn @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…
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oldkarl
@oldkarl
@oldkarl
Posts: 605
Joined: May 25, 2016
@steeldove @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.
REPLY
oldkarl
@oldkarl
@oldkarl
Posts: 605
Joined: May 25, 2016
@johnbishop 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."
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
@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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steeldove
@steeldove
@steeldove
Posts: 147
Joined: Jul 31, 2017
@johnbishop 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."
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
@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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steeldove
@steeldove
@steeldove
Posts: 147
Joined: Jul 31, 2017
@oldkarl @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.
@oldkarl @barbarn It's good that we've lived long enough to be able to laugh about it!
REPLY
arnrob
@arnrob
@arnrob
Posts: 43
Joined: Aug 11, 2016
@johnbishop @arnrob do you remember what the link is about or what it said? I'm not sure which link it may be. Thanks! John
Hi John
The post I referred to was to "paulfj67" and was dated September 10. However, I checked the link again and I got to where I wanted to be. I eventually got to the Facebook page for the Neuropathy group. There I found this extensive list of OTC compounds (which I originally saw some months ago in another post from you and which I have been trying to find ever since). I would like to ask a question, if I may? It's been 19 years since my first diagnosis. Since that time I, like many others, have gone through countless procedures and countless more medications by MD's in 3 states. As expected, nothing worked. That is why I was drawn to the protocol on the Facebook page and what was in your email from many months ago. My question is: how much do the items in the protocol list cost assuming I purchased all of them??
Thank you for being an important mainstay for our web site and all of the quite helpful suggestions you have to offer to all of us.
Arnrob
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John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 4792
Joined: Mar 22, 2016
@arnrob Hi John
The post I referred to was to "paulfj67" and was dated September 10. However, I checked the link again and I got to where I wanted to be. I eventually got to the Facebook page for the Neuropathy group. There I found this extensive list of OTC compounds (which I originally saw some months ago in another post from you and which I have been trying to find ever since). I would like to ask a question, if I may? It's been 19 years since my first diagnosis. Since that time I, like many others, have gone through countless procedures and countless more medications by MD's in 3 states. As expected, nothing worked. That is why I was drawn to the protocol on the Facebook page and what was in your email from many months ago. My question is: how much do the items in the protocol list cost assuming I purchased all of them??
Thank you for being an important mainstay for our web site and all of the quite helpful suggestions you have to offer to all of us.
Arnrob
Hi Arnrob,
Glad you found the link. I think the price ends up to be 5 to 7 dollars a day total because some of the items are more than a monthly supply but ordering everything at once to start is a little less than $200 (I'm guessing). The group is a 501c3 organization and has a website ( http://solutions2pnpd.com/ ) that goes along with the closed Facebook group. There are also options for some of the items that are more bio-available and cost a little more so you can go with the lower cost ones but it normally means more pills (yuck). I would recommend joining the group and then reading all of their research files and new member information before ordering anything.
The group also has a Help Another Member (HAM program) that members donate to and the moderators select people who are having trouble affording the cost of the protocol.
I don't know if it will work for you but it's certainly worth a try if nothing else has helped. I would just like to reiterate that it's important to read through their information and do your own research if you have any questions. The group also has a weekly Facebook live session that new members can ask questions of others. While I don't have pain with my PN and only have the numbness I decided to try it. The numbness was in both legs from the toes to just below the knees. For me, after 2 months of taking the protocol the numbness went from just below the knees to just above the ankles. I really thought it was going to get rid of it. I've been taking it since Oct 2016 and it was Dec 2016 that I noticed the change in the numbness but I haven't made any progress since. The numbness is still just above the ankles. I am still taking it because I feel like it's stopped the progression which my neurologist told me was going to continue. So I just look at it as my new normal and I'm happy with it. You have to take my example with a grain of salt as it's subjective to the my perception of the numbness — I haven't had any additional EMGs to say YAY! It's better now.
Good luck with whatever you decide.
John
@lisalucier Hi, @nikkig, and welcome back to Connect. Glad to have you here. I merged your post with this one as there are many members here talking about neuropathy with whom I thought you'd like to interact.
I can hear some urgency in your post, and I'm sorry that you are now dealing with digestive issues, feeling very depressed and have anxiety through the roof, plus have been taken off your diabetes meds.
Here are a few threads you also might want to check out:
– About diabetes: https://connect.mayoclinic.org/discussion/type-two-diabetes/, if you have Type II, or https://connect.mayoclinic.org/discussion/type-1-surprise/, if you have Type I
– About gastroparesis: https://connect.mayoclinic.org/discussion/gastroparesis/
– About depression: https://connect.mayoclinic.org/discussion/depression-3/
Hoping that members like @jjwest @johnbishop @oldkarl @hosta @steeldove and others may have some insights for you as you are dealing with the neuropathy along with the other health concerns.
You'd mentioned previously, @nikkig, experiencing some pins and needles, numbness and sleeping problems. Is this what you are still seeing with your neuropathy, or are you having some different symptoms currently?
Yes, and the symptoms all came at once…like a hurricane. The hands / arms were really bad but after the vitamin b 12 have been better. My stomach still having a lot of problems. I really think this all links back to the years of a vitamin deficiency and my doctor's negligence not to test me for it while giving me Metforim, which he said had almost no side effects. I am so mad at myself.
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arnrob
@arnrob
@arnrob
Posts: 43
Joined: Aug 11, 2016
@johnbishop Hi Arnrob,
Glad you found the link. I think the price ends up to be 5 to 7 dollars a day total because some of the items are more than a monthly supply but ordering everything at once to start is a little less than $200 (I'm guessing). The group is a 501c3 organization and has a website ( http://solutions2pnpd.com/ ) that goes along with the closed Facebook group. There are also options for some of the items that are more bio-available and cost a little more so you can go with the lower cost ones but it normally means more pills (yuck). I would recommend joining the group and then reading all of their research files and new member information before ordering anything.
The group also has a Help Another Member (HAM program) that members donate to and the moderators select people who are having trouble affording the cost of the protocol.
I don't know if it will work for you but it's certainly worth a try if nothing else has helped. I would just like to reiterate that it's important to read through their information and do your own research if you have any questions. The group also has a weekly Facebook live session that new members can ask questions of others. While I don't have pain with my PN and only have the numbness I decided to try it. The numbness was in both legs from the toes to just below the knees. For me, after 2 months of taking the protocol the numbness went from just below the knees to just above the ankles. I really thought it was going to get rid of it. I've been taking it since Oct 2016 and it was Dec 2016 that I noticed the change in the numbness but I haven't made any progress since. The numbness is still just above the ankles. I am still taking it because I feel like it's stopped the progression which my neurologist told me was going to continue. So I just look at it as my new normal and I'm happy with it. You have to take my example with a grain of salt as it's subjective to the my perception of the numbness — I haven't had any additional EMGs to say YAY! It's better now.
Good luck with whatever you decide.
John
Thank you. Could not ask for a more comprehensive, transparent and forthright response.
Arnrob
John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 4792
Joined: Mar 22, 2016
@nikkig Yes, and the symptoms all came at once…like a hurricane. The hands / arms were really bad but after the vitamin b 12 have been better. My stomach still having a lot of problems. I really think this all links back to the years of a vitamin deficiency and my doctor's negligence not to test me for it while giving me Metforim, which he said had almost no side effects. I am so mad at myself.
Hello @nikkig, I hope you are not too mad at yourself. I think we've all had that feeling at one time or another. We just have to make it a wake up call and start advocating for own health issues. I'm glad you're back also. You might find this article interesting that was originally posted by @steeldove
Neuropathic Pain: Navigating the Challenges of an Elusive Disease (April 2017)
— http://www.neurologyadvisor.com/neuropathic-pain/neuropathic-pain-prevention-diagnosis-and-treatment/article/649362/2/
@nikkig do you have any questions you are trying to get answered? We have a lot of members here with a variety of different experiences that I'm sure can help.
John
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John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 4792
Joined: Mar 22, 2016
@arnrob Thank you. Could not ask for a more comprehensive, transparent and forthright response.
Arnrob
Thanks for the kind words Arnrob. Hope you can keep us updated if it works for you too. I know most of the others in the group with pain with their PN have been able to taper off all of the drugs and only take the supplements.
John
arnrob
@arnrob
@arnrob
Posts: 43
Joined: Aug 11, 2016
@darlia As a matter of fact I have recently been diagnosed with the FGFR3 ANTIBODY (rare) which is the CAUSE of my peripheral neuropathy now I am told.
Also have Gastroparesis because of this ANTIBODY. Neurotically my stomach nerves don’t work properly and it takes my stomach 5-6 x longer to digest
I posted a post titled FGFR3 ANTIBODY, for those interested, please go there and leave me your comments.
Just knowing the CAUSE now starts to feel a little better.
@darla, can you explain more about this. I am getting tested for Gastroparesis in Thursday, but having bowel issues too. I have not been well for a while.
Dealing with it? Indeed. My doctor told me that my Neuropathy is beyond the point of improvement. But who knows. I can either let it take it's course (death) or fight it and die at a later inevitable date. But right now…the pain is 24/7. I am 71 winters and if I make it to the Springtime ….who knows…I may get married and write a book!
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@steeldove
In reply to @jjwest
@jjwest ** Thanks for the tip. I just added Tylenol Arthritis to my shopping list.
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