Should I see a Neurologist who specializes in PN?

Posted by scain @scain, May 23 11:59am

I have PN due to Diabetes 2. I have a neurologist who prescribes med for pain and is sympathetic but does not specialize in PN. In your experience is it worth the time and trouble to seek a neurologist who specializes in PN? My foot pain seems to be getting worse and I am worried about progression. She has never said that it will progress but I have read that it will. Of course I am frightened about winding up in a wheelchair. My mobility now is limited and this week especially bad in the pain department. Please let me know your thoughts. Thank you.

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

I had symptoms of DN in my chest and Lyrica/PreGabalin seems to helped with that.

If I were in your shoes I might see a podiatrist first.

Here is something that may help with the pain.
https://www.qutenzahcp.com/dpn/about

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Hello @scain
So sorry about what you’re going through. Something you may or may not know, peripheral neuropathy due to diabetes is the most researched type of neuropathy because the cause is known and scan possibly be controlled by controlling your diabetes properly. You might really wish to look more with your PCP if your diabetes is quite under control. Also do some digging online into this. It’s the most widely researched type of PN.
Wishing you the best always. Take care and have a serene week,
gus

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Thank you. I didn't realize that there was so much info available for diabetic peripheral neuropathy. I will definitely be doing a deep dive tonite on it. Again, this site is spectacular for generous individuals who are willing to share their knowledge and experience. This is invaluable to all of us and something that I am pretty sure from reading all your comments for a long time that we are not getting from either our primary doctors or specialist neurologists. Thank you again, gus.

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Peripheral pain is due to nerves loosing their insulation , same as wiring loosing plastic coat.
Vitamin B12 makes new blood cells AND new nerve insulation. Most seniors are low B12 because we have less stomach acid. Acid removes B12 from food. Then of course most seniors eat way too little foods that contain B12 anyway ,that`s ANIMAL protein. Alcohol dulls the tips of millions of intestine and stomach villi, so there's less absorption. I take B12 in the form of METHYLCOBALAMIN. It works. A really good food source of B12 is plain old fashioned seafood, MUSSELS . Even better than liver.
I have nil nerve pain in my 83.5 yr old body. Go for it.

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Profile picture for John, Volunteer Mentor @johnbishop

Hi @scain, It's a tough question to answer for me because I only have numbness but I have asked myself a similar question. I spent 40+ years watching my numbness starting in the toes, then the feet, then the legs until I decided to see a neurologist have some tests and get my diagnosis of idiopathic small fiber peripheral neuropathy. During those 40+ years I had many different PCPs and they all said it's probably neuropathy and nerve damage. I had asked many of them if I have the different nerve conduction tests and exam what can you do to treat the numbness and the answer was always, we can only treat the pain and there isn't anything we can do for the numbness. So when I finally just had to know and set up an appointment with a neurologist and received a diagnosis, I got the same answer from him that I had from all my PCPs - we don't have any treatments to help with the numbness. That's what brought me here to Connect.

I also was worried about progression. In your case it may be different since you are taking medications for the pain and there may be other treatments that work better for the pain. You mentioned your PN is due to type 2 Diabetes. Are you able to manage your diabetes OK or have you made any lifestyle type changes to see if they may help some?

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@johnbishop
Nerve pain is due to missing insulation MYELIN.
An animal protein diet provides plenty of B12.
B12 makes new blood cells AND new nerve insulation.
Taking METHYLCOBALAMIN is a short cut to fixing nerve pain. That's the medical name for B12.

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Profile picture for jamessaxo @jamessaxo

Peripheral pain is due to nerves loosing their insulation , same as wiring loosing plastic coat.
Vitamin B12 makes new blood cells AND new nerve insulation. Most seniors are low B12 because we have less stomach acid. Acid removes B12 from food. Then of course most seniors eat way too little foods that contain B12 anyway ,that`s ANIMAL protein. Alcohol dulls the tips of millions of intestine and stomach villi, so there's less absorption. I take B12 in the form of METHYLCOBALAMIN. It works. A really good food source of B12 is plain old fashioned seafood, MUSSELS . Even better than liver.
I have nil nerve pain in my 83.5 yr old body. Go for it.

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@jamessaxo wow very impressive knowledge. I will check it out.

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@scain As far as I know, all neurologist work with people who have neuropathy.

I have had Polyneuropathy for many years. Unfortunately, my nerves got damaged from an autoimmune disease I had 10 years ago. The disease is a rare form of Vasculitis. It inflamed my arteries so much that my nerves were not getting fed.

Do you know WHY you developed neuropathy? Many people don’t unless they have diabetes.
I believe knowing the reason for your condition, takes some of the stress off.

Despite the commercials, and ads promising a cure there is no cure…
People who are on this Mayo site will attest to the fact that they have spent lots of money on gadgets, and have been ripped off.

I choose to take an over the counter supplement, Alpha-Lipoic Acid. (ALA).
It absolutely helps me with pain. I take 600mg. twice a day. My neurologist suggested that I take it.

ALA is sold anywhere vitamins and supplements are sold.

Just be careful with the promises of a cure. Products that offer to just ease the pain are something to consider.

I wish you well.

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Profile picture for jamessaxo @jamessaxo

Peripheral pain is due to nerves loosing their insulation , same as wiring loosing plastic coat.
Vitamin B12 makes new blood cells AND new nerve insulation. Most seniors are low B12 because we have less stomach acid. Acid removes B12 from food. Then of course most seniors eat way too little foods that contain B12 anyway ,that`s ANIMAL protein. Alcohol dulls the tips of millions of intestine and stomach villi, so there's less absorption. I take B12 in the form of METHYLCOBALAMIN. It works. A really good food source of B12 is plain old fashioned seafood, MUSSELS . Even better than liver.
I have nil nerve pain in my 83.5 yr old body. Go for it.

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@jamessaxo hi James. The wearing off of the myelin sheath is just one way to acquire Polyneuropathy.
My dad had CIDP, and that’s what happened to him.

For someone like me and many others, Polyneuropathy can be caused by:
“There are other causes like, traumatic injuries, infections, metabolic conditions, exposure to toxins, and diabetes.”.(Mayo Clinic)

There is no cure only relief.

Susan

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Profile picture for scain @scain

Thank you. I didn't realize that there was so much info available for diabetic peripheral neuropathy. I will definitely be doing a deep dive tonite on it. Again, this site is spectacular for generous individuals who are willing to share their knowledge and experience. This is invaluable to all of us and something that I am pretty sure from reading all your comments for a long time that we are not getting from either our primary doctors or specialist neurologists. Thank you again, gus.

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Really happy to help any way I can. We’re all suffering from this invisible condition and we’re all in the same boat.
Take care and best wishes,
gus

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Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@jamessaxo hi James. The wearing off of the myelin sheath is just one way to acquire Polyneuropathy.
My dad had CIDP, and that’s what happened to him.

For someone like me and many others, Polyneuropathy can be caused by:
“There are other causes like, traumatic injuries, infections, metabolic conditions, exposure to toxins, and diabetes.”.(Mayo Clinic)

There is no cure only relief.

Susan

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@SusanEllen66
True. But generally people of very low B12 loose nerve insulation.

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