What questions to ask

Posted by Mrs. H @amberheilman, Wed, May 29 11:22am

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❤

I would suggest writing down your questions to your doctor ahead of time, before you see him. Then, just take out your questions in his office. Also, I think the burning is very normal for what you have. Very unfortunate, but true. You may want to try CBD drops and salves. They are very helpful. Also, if you can, bring in a friend to the doc office, to help you. Just thinking….. Good luck. Lori Renee

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@amberheilman — Writing down a list of questions to take with you as @lorirenee1 suggests is a great idea. I've done that multiple times and it has helped me remember questions that I needed to ask the doctor. You also may want to start your own research on your diagnosis and learn everything you possibly can about small fiber neuropathy.

There are some good tips on seeing a new specialist or doctor by @roch here:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

You may also want to join the following discussion where you will meet other members who share your symptoms and can learn what they are doing that helps with their symptoms.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Liked by Mrs. H

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@lorirenee1

I would suggest writing down your questions to your doctor ahead of time, before you see him. Then, just take out your questions in his office. Also, I think the burning is very normal for what you have. Very unfortunate, but true. You may want to try CBD drops and salves. They are very helpful. Also, if you can, bring in a friend to the doc office, to help you. Just thinking….. Good luck. Lori Renee

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Thanks

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In reply to @amberheilman "Thanks" + (show)
@amberheilman

You are welcome!

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@johnbishop

@amberheilman — Writing down a list of questions to take with you as @lorirenee1 suggests is a great idea. I've done that multiple times and it has helped me remember questions that I needed to ask the doctor. You also may want to start your own research on your diagnosis and learn everything you possibly can about small fiber neuropathy.

There are some good tips on seeing a new specialist or doctor by @roch here:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

You may also want to join the following discussion where you will meet other members who share your symptoms and can learn what they are doing that helps with their symptoms.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Jump to this post

Have you heard of these multi vitamins called, ultra preventive III. I am super wary to purchase. So many things do not help.

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@amberheilman

Have you heard of these multi vitamins called, ultra preventive III. I am super wary to purchase. So many things do not help.

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Hi @amberheilman — I have not heard of the vitamins but I would be super wary also. One thing stands out to me is the vitamin B6 in the supplement is 50 mg dosage or 2500% of daily allowance. I have no medical training or background but have done some research into B6 because it is one of those vitamins that can cause toxicity and actually make neuropathy worse.

Here are some research links I've found….

VITAMIN B6 TOXICITY
http://www.easy-immune-health.com/vitamin-b6-toxicity.html
B Vitamins for Neuropathy and Neuropathic Pain
https://www.omicsonline.org/open-access/b-vitamins-for-neuropathy-and-neuropathic-pain-2376-1318-1000161.php?aid=90896
B6 section it explains — too much or too little gives neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/
NIH – Nutritional Neuropathies
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

Vitamin B6 Toxicity Revisited: A Case of Reversible Pyridoxine-associated Neuropathy and Disequilibrium. (P4.021)
http://n.neurology.org/content/90/15_Supplement/P4.021

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After 15 months my BIG question is still 'what is the cause of my peripheral neuropathy'? As I research, I read over and over I read how it is important to find the cause and to do so early so you can treat it. Not diabetic, not chemo. induced, no nerve damage…just idiopathic. So it continues to increase from feet only to lower legs and now reached thighs. Perhaps you can ask what type of doctor can help you if he/she can not? What tests would be useful in determining cause and thus treatment? Read up, ask for bloodwork regarding vitamin B levels, images of spine may provide a clue, my neurologist only wanted to offer pain pills, no thank you I prefer to get to the root of it and hopefully a cure! Still on my quest.

Liked by Mrs. H

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Look I really do not have all the answers. But I just came frim Alaska after 30 days. I have been using CBD oils that seem to help. But only for three or four hours.

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@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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@wisfloj

After 15 months my BIG question is still 'what is the cause of my peripheral neuropathy'? As I research, I read over and over I read how it is important to find the cause and to do so early so you can treat it. Not diabetic, not chemo. induced, no nerve damage…just idiopathic. So it continues to increase from feet only to lower legs and now reached thighs. Perhaps you can ask what type of doctor can help you if he/she can not? What tests would be useful in determining cause and thus treatment? Read up, ask for bloodwork regarding vitamin B levels, images of spine may provide a clue, my neurologist only wanted to offer pain pills, no thank you I prefer to get to the root of it and hopefully a cure! Still on my quest.

Jump to this post

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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@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

Jump to this post

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

Jump to this post

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!

Jump to this post

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

Liked by Lisa Lucier

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Thank you, Same here Amber

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