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Colleen Young (@colleenyoung)

Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 2 days ago | Replies (3768)

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Hello everyone. 😉 Hi everyone, my name is Alma. I am pleased to meet you. For several years now, I believe I have neuropathy, yet every time I mention it to my neurologist, I also have stiff person syndrome. My feet get very hot and/or get to a freezing temperature. Right now for example, my feet are curling down (I am in severe pain). There are days that my feet are so numb. Wearing socks is a definite no-no for me. I can have loose socks on and within a few minutes the socks will make indentations. This has been going on since I was diagnosed with Stiff Person Syndrome in 2009. As I indicated, my neuro really hasn't done or said anything about this issue. I need help. Today, is a very bad day. Thank you for reading this.

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Replies to "Hello everyone. ;) Hi everyone, my name is Alma. I am pleased to meet you. For..."

Hi Alma @mrsbv, There is another discussion here on Connect that I think you may find helpful and may offer an alternative therapy to treat your pain.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain

Hi Alma!
Welcome to our group!
As you many know, we are not medical people, but people who have experiences to share with you.
We are also VERY GOOD listenters.

I am happy you are seeing a neurologist, but sad that your voice is not being heard!
Is this the only reason why you see the neurologist or are you being treated for other ailments?
Have you ever had a test to determine if you have any nerve damage in your legs?

I have many of the symptoms you have.
My feet get so cold, they actually hurt!
I have one toe that is starting to turn down, too.
I tried on closed shoes today, and not only did I have a difficult time getting my foot in, but when I finally didn, my toe was turned down making it impossible to walk.
Thank goodness I live in a warm climate where I can wear flip-flops most of the year.

My neurologist sent me to a vascular doctor for a couple of different kinds of ultra sounds to see if I have any vascular problems.
According to the neurologist, my blood flow is not good in either leg.
He says the blood is puddling in one area.
I had an ablation (where they burn off the end of the nerve) so that the blood would be re-routed.
I was told at the beginning it probably would do nothing for the neuropathy of when my toes turn anywhere from blue to purple to almost black when they hang.
All the procedure did, which is important, is help with the swelling.

The reason I tell you this is so that you can share it with your doctor.
Perhaps he/she will get some ideas of alternatives for you AND MOST IMPORTANTLY, listen to you!

Good luck!
Ronnie (GRANDMAr)