What questions to ask

Posted by Mrs. H @amberheilman, May 29, 2019

Hi guys. Last time I started/joined a discussion I went really dark😁
So much better mentality. Thanks for not kicking me out.
So I have a dr. Appointment coming up & I just go blank when I go in. I was so glad "it" wasn't lupus last time. He diagnosed me with sfn & Then dr asked if I had any questions. Nope, nothing.
Well, now I have questions. My skin is burning like I have a sun burn. Is that normal? Is the progression of 5 months just in my feet to everywhere normal? He did not speak of preventing or anything. Going for 2nd opinion in july.
Would like more homeopathic. Did frankincense &myrrh, changing diet, less stress. Still getting worse. What questions am I missing?
I am fighting this, but I will not just drug myself❤

Interested in more discussions like this? Go to the Neuropathy Support Group.

@amberheilman

EXACTLY!
I have had 28 different vials of blood taken. MRIs up & down my spine. If I was older, diabetic, had chemo it would be alittle bit easier to swallow I think. I am not even 40 & in 5 months IT IS EVERYWHERE, CONSTANTLY! Every move burns or tingles, from my eyes & tongue to my organs, lungs & skin in general. I am being attacked. Diet is my 1st course of Change. I am not going to drug myself & give up. I am too mad & scared to give up. To much living still to do. My son asked me if i am going to get my "green card" 🤣 if it helps me be normal, I just might

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Mrs. H I am so sorry. You are much younger than me (64) and this truly sucks! Get the card! I would if I had it as badly as you. I forgot, I did lots of bloodwork as well. And what good was that? I felt cheated because two months before retiring this all started and now after all of our similar testing we have no answer. I asked about lasers, particularly Calmare (or Scrambler)Therapy. Nobody on here had experience. I will spend my retirement savings for whatever treatment just so I can at least enjoy these years!

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@johnbishop

@wisfloj I've given up my quest to determine the root cause of my idiopathic small fiber peripheral neuropathy. It's been with me for over 20 years before I even decided to get a diagnosis. I have no medical training or background but do a lot of reading and searching on the topic. There really is no cure for neuropathy. Neuropathy = dead, damaged or compressed nerves and that's pretty much the bottom line. Sometimes surgery can help if nerve compression is the root cause. My goal has been to keep mine from getting any worse or slowing down the progress. I heard a talk by an 80+ year old research neurologist from the University of Minnesota who said if you live long enough you will get neuropathy because sooner or later nerves die. I think nutrition plays a large part, as well as eliminating sugar and alcohol which are both bad when you have neuropathy. I think the best that we as patients can do is be our own advocate, learn as much as we can about our condition and find something that treats or helps reduce our symptoms.

The Foundation for Peripheral Neuropathy has a lot of good information on their site but it's just the tip of the iceberg.
https://www.foundationforpn.org/what-is-peripheral-neuropathy/types-risk-factors/

One of the things that got me to focus more on nutrition was the TED Talk "Mind your Mitochondria" by Dr. Terry Wahls

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Thanks John, excellent TED talk. and I thought my big green smoothie every day was sufficient!😳

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@wisfloj

Mrs. H I am so sorry. You are much younger than me (64) and this truly sucks! Get the card! I would if I had it as badly as you. I forgot, I did lots of bloodwork as well. And what good was that? I felt cheated because two months before retiring this all started and now after all of our similar testing we have no answer. I asked about lasers, particularly Calmare (or Scrambler)Therapy. Nobody on here had experience. I will spend my retirement savings for whatever treatment just so I can at least enjoy these years!

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I am sorry to hear your situation as well. Take care. When I find something that helps, I will let you know❤

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Thank you, Same here Amber

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