Increasingly Difficult to Accept Peripheral Neuropathy

Posted by fisbo @fisbo, Oct 10, 2022

I am finding it increasingly difficult to accept peripheral neuropathy it's all very well people coming up with suggestions but carrying them out is quite another. I am no longer who I was and think I am boring and miserable because I am now. Pain takes over and I have become fearful nervous prone to panic attacks which are awful because I start to shake with worrying about the future. I have other worries anyway but if this damned PN would go away it would help.

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@rwinney

Hi @fisbo - Bummer, and so the journey continues. When is your DAT scan scheduled for? Unfortunately, hurry up and wait is pretty typical unless results are game changing. Ask to be placed on their waiting list.

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It's on 3/11 so it's it too bad. My own GP said he can give me the results so I won't have to wait to see the neurologist as that appoinrment will be a few weeks after the scan. I just feel afraid about it I went there about my feet and legs!

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@fala

These posts are a big inspiration for me. We are NEVER alone in feeling lonely or sad. I find I can get "down in the dumps" easily these days. If I don't feel bad for myself, I feel bad for someone else. Soon, I am going to visit my daughter who has cancer. Best I enlarge my positivity so I can show some hope and acceptance of a bad situation. Yep, we all know things can get worse, so keep let's keep finding the good. (Spread the word)

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Anyone else tried CBD cream for neuropathy? When mine gets bad I slather it on tops and bottoms of my feet--it helps. Course you have to find the right one--I tried about a dozen that didn't do much, then I found this one that has CBD and also a lot of pain fighting herbs and MSM. Does help relieve.

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@calannie

Anyone else tried CBD cream for neuropathy? When mine gets bad I slather it on tops and bottoms of my feet--it helps. Course you have to find the right one--I tried about a dozen that didn't do much, then I found this one that has CBD and also a lot of pain fighting herbs and MSM. Does help relieve.

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Hi @calannie, There is another discussion on the CBD topic that you might find helpful by reading what others have shared:

-- CBD oil for Neuropathy:
https://connect.mayoclinic.org/discussion/cbd-oil-for-neuropathy/

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I’m so sorry you are going through this. When we get diagnosed with any disease like PN we go through the different steps of morning. Neuropathy is not the end of the journey, it’s the beginning of a new one. I’ve had Autonomic Neuropathy along with Small Fiber Sensory Neuropathy for 15 years. You can survive this and you can prosper. We have all found ways to cope which gives you a measure of control.
Hang in there ( it’s not easy to say because I’ve had all the battles) but you could have gotten news that’s much more difficult to deal with.
Stick with us, we’ll help you through this.

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@fisbo

Thank you for this but I've now been told it isn't pn so what is it that is causing pins and needles burning pain in my feet and lower legs? I saw a neurologist yesterday who has decided I am to have a DAT scan which detects Parkinson Disease. You can imagine how I feel now..

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I went through a similar issue. One neurologist said I had neuropathy and another one said I had MS. Eventually you will get to the bottom of this and find out what you have. Finding a physician that deals specifically with neuropathy would be your best solution at this time. They will know usually on your first visit. They know the disease very well.
Hope you find out soon. But don’t let either of those diseases define you. You can get through this.

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@frattmaa

I went through a similar issue. One neurologist said I had neuropathy and another one said I had MS. Eventually you will get to the bottom of this and find out what you have. Finding a physician that deals specifically with neuropathy would be your best solution at this time. They will know usually on your first visit. They know the disease very well.
Hope you find out soon. But don’t let either of those diseases define you. You can get through this.

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Thank you what did you eventually have? I can't see a neurologist who specialises in neuropathy because that is difficult in the UK unless you go private I did go semi private and was told it was likely small nerve fibre Neuropathy. Now to be told I don't have it makes no sense. I have all the hallmarks of it I should know. A DAT scan to test for Parkinsons is very depressing and doubtful as well. Probably be a complete waste of time.

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@fisbo

Thank you what did you eventually have? I can't see a neurologist who specialises in neuropathy because that is difficult in the UK unless you go private I did go semi private and was told it was likely small nerve fibre Neuropathy. Now to be told I don't have it makes no sense. I have all the hallmarks of it I should know. A DAT scan to test for Parkinsons is very depressing and doubtful as well. Probably be a complete waste of time.

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Ask your neurologist for a tissue biopsy. They take small pieces of tissue from your ankle up to your hip. Under a microscope they can see the nerves and damage or loss of the amount of nerves you should have.
It took me 8 years of tests. It was pretty difficult. So my diagnosis: non length dependent small fiber sensory neuropathy. Means from the bottom of my feet to the top of my head. Autonomic neuropathy. This is more serious. The disease has killed the nerves in my heart, eyes, kidneys and bladder. Because if the nerve death in my heart they started out putting a pacemaker in plus numerous meds. Nothing is working any more and I am on Hospice. I have about 6 months to live. I’ve been declining pretty fast lately. The only think hospice can do now is make me comfortable. This means a bunch of opiates to try to control the pain.
I hope you get the answers soon. If caught early there is a lot that can be done to slow down the progression of the neuropathy and help to remove your pain. I hope thing work out for you.

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So sorry to hear your diagnosis. The amazing thing is it took them long enough to get there and something surely could have been done. I really am thinking of you and hope that maybe something can be done for you

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frattmaa - I have to agree...it is the "beginning of a new one" and for many of us with PN, that is probably the largest hurdle. Being told what you have, then figuring out what it is, what it means, then going thru testing are hurdles all along the way. Along the process, we tend to think uh oh. Then, over time, at least for me, it was the realization that this isn't going away and along those lines, I need to make changes....can't do things the old way. That was all a big hurdle for me but I did modify my life and made changes. It has worked. I wish all with PN the best!! Ed

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This site has a sub blog concerning the use of supplements to fight PN. Mine isn’t gone, but the pain is much reduced. Look at that blog and you should get some relief.

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