Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
Tylenol Arthritis works best for me. 2 put me right to sleep and helps me sleep thru the night. Regular Tylenol does nothing.
Liked by John, Volunteer Mentor, steeldove, 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".
Liked by hosta, Eve, Lisa Lucier, steeldove
Hi All, I am back. I am a controlled diabetic and now suddenly have been having some neuropathy. I was also vitamin B12 deficient and don't know how long, which may actually have been the smoking gun. The strange thing is I have been having digestive issues, which seems to be usually very secondary or rare compared to the rest. The digestive symptoms started out as pain (thought it was kidney stones), but then it grew and now they think it is gastroparesis. I start with testing next week. I am very depressed. My life changed in a matter of weeks. I am only 48. Anyone else out there have a similar rapid decline or this kind of onset, dealing with eating issues… I have been reading about the Cleveland Clinic and if this turns out to be that, I will go there to work with doctor Cline. I have kids still I need to mother. My anxiety is through the roof. They also took me off my diabetes meds and said I to just manage it with diet. I am calling my ENDO today since this was a recommendation from the GI and my primary, whom I have dropped due to negligence (he should have been testing me for vitamin B 12 deficiency because I was on metforim). Doctors overbook and then don't do their homework to ensure they are taking care of you. I just had blind faith trust. He told me I was doing great.
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?
Liked by John, Volunteer Mentor, nikkig
@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
Liked by John, Volunteer Mentor, Lisa Lucier
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.
Liked by John, Volunteer Mentor
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.
Liked by John, Volunteer Mentor
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.
Liked by John, Volunteer Mentor
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:
Hope this helps.
John
Liked by Colleen Young, Connect Director
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
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@jjwest
I am currently taking 88mg every six hours with 50mg of Tramadol