Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
I was diagnosed with SFN recently. I have read a lot of post but mine is different. I feel like I am having a heart attack everyday. I had to go to Mayo Clinic in Florida to get answers. I have shortness of breath, pressure in the center of my chest with pain in the same place, get sharp stabbing pains on both sides mostly on the left side around my heart, tingling in hands, groin, and face. I also hurt in between my shoulder blades, bowel and bladder issues, blood pressure drops when I stand up and stays low. I have been dealing with this for over a year. I am unable to work because of it. I also can not sleep, I have PLMD. My feet stay sore and swell. Eyes are effected, my hearing also. There is more but as you can see I have not quality of life.
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@jimhd and @johnbishop
Biotin is a B-vitamin. B-vitamins are water soluble, therefore you don’t have the same risk of overdosing. Here is some information from WebMD regarding Biotin that you might find interesting, https://www.webmd.com/vitamins-supplements/ingredientmono-313-biotin.aspx?activeingredientid=313&activeingredientname=biotin
Based on this information, I may take some as well 🙂
Liked by John, Volunteer Mentor
The only one you really have to be careful of is B6…not your typical B vitamin as far as water soluble. And if you are one that has high levels of it already, you have to be careful of any supplement you take because some of them have a lot of B6 in them.
Liked by Teresa, Volunteer Mentor, Jim, Volunteer Mentor
@johnbishop Thanks for that information, John. I was not aware of the problems that can occur with B6 – this was all new to me.
I learned about the B6 toxicity from members of the closed Facebook group…some of whom were affected by it and made pretty sick until it was identified as the cause of some of their health issues.
Liked by Teresa, Volunteer Mentor
I’ve been taking 1000 mg of B6 for more than 35 years when it was discovered that my body did not handle B6 properly. Under any kind of stress, I pee out all B6 leaving not enough for my body’s needs. So I take the large doses in order to have the very small amount needed for proper functioning. Whenever my B6 level has been tested, it shows up as normal. I have an appointment next February with a neurologist in Dr. Oaklander’s network, and will be interested to see what he has to say about my B6.
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Another interesting article from NIH concerning Neuropathy Pain due to Small Fiber Neuropathy in Aging, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4548010/
Liked by Colleen Young, Connect Director, John, Volunteer Mentor, Teresa, Volunteer Mentor
Thanks @steeldove, It is an interesting article. It reminded me of a statement about if you live long enough you’ll get PN made by Dr. William Kennedy at the Minnesota Neuropathy Association 20 year celebration in Sept 2016. My notes from his speech:
3rd Speaker – Dr. William Kennedy – “Simple inventions that quantify touch on finger, vibration on toes and sweating in neuropathy”
My favorite speaker of the day. All of the speakers had a Q & A after their talk and one of the burning questions of the day was how many people are affected by neuropathy in the U.S. and around the world. Pam and Dr. Walk had both said they thought the numbers were around 20 million in the U.S. and up to 128 million in China. Dr. Kennedy said he would take exception with his younger counterparts and said it’s more like 100% if you live long enough. Since there was some discussion of idiopathic PN, Dr. Kennedy asked if we knew how the diagnosis is made for idiopathic. Got my best laugh of the day when he told us it got the name from the idiot neurologist who diagnosed it.
Dr. Kennedy went on to talk about his research work on developing a tool he would like to make available in every GPs office to easily test for neuropathy. More information can be found on his website: The William R. Kennedy Lab – http://kennedylab.med.umn.edu/.
@johnbishop. I understand that such a device already exists, but it’s pricey. My neurologist in Massachusetts mentioned such a device when we were discussing the “sweat test” I underwent at Mayo last January. She said that a small device can detect SFN by scanning a patients hands when they are placed on the screen.
Hi @steeldove, I had not heard of a hand scanning device to detect neuropathy. I did find a couple of references about it. It’s called a Sudoscan. It sounds interesting. The actual product looks like it was only released last year so probably not too many facilities have it or are aware of it. Hope it works out.
i like the title of this thread… Anyone here dealing with PN? Well, PN is making a mess out of my life. I was putting on my compression stocking s a couple days ago. In the process, I unknowingly caught my pinky toe in the stocking, and pullet it off to the side. I can not feel a think with that foot. Consequently, I broke that pinky toe. Snapped the bone in half. CRAP. I think I am losing calcium in my bones as well, due to the hATTRwt amyloidosis. Yes, someone here is dealing with PN.
So sorry to hear of your broken toe. Not having feeling in your lower extremities certainly puts you at a disadvantage. Is there any treatment for the broken toe?
@Hi, Teresa. No, not much treatment, I think, other than tape to the next toe. Except that I am concerned about losing calcium in my bones. That is the norm in most forms of Amyloidosis, especially hATTRwt. We shall see.
Hi @oldkarl, are you taking any calcium supplements? I’m supposed to take 1200 mg daily but I’ve stopped it because it binds me up pretty good. I have been thinking of trying the calcium chews as I’ve heard they are better and don’t cause the constipation that the standard pills do. In the mean time I’ve add collegen to my daily routine which is good for the joints, nails, and hair (as if I had any to worry about!). I know it’s really helped with the fingernails and toenails. I’ve even gotten my wife on it. I use the Great Lakes, Collagen Hydrolysate Gelatin which mixes pretty well in cold water.
@johnbishop Thanx, John. I am waiting for a callback, but I am pretty sure I will be taking calcium, as mine is below standard reference range, and going down. The constipation bit worries me as I alternate between constipation and diarrhea, about every 4 days. Standard for Amy.
Hi old karl and john – Please don’t count on the “jelly” variety of calcium to be less of a constipation-er (medical term)! I looked for a long time to find a tasty calcium jelly that would be both candy and good for me. I experienced the constipation almost immediately. My mother, on the other hand (she died at nearly 102) took the regular old whopping big calcium pills most of her life and never had a problem with it. This tells me it may be an individual thing but she usually had a cup of strong coffee in the morning and had to stop that ’cause it gave her the “trots” – so who knows? Might try several different permutations of the calcium &/or coffee…. hmmmm?
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