Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Does anyone else have random itchiness due to the peripheral neuropathy!?? If not, I will investigate if it’s caused by the rare FGFR3 ANTIBODY that I have.

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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RE:  Your question about Charlotte's Web on the internet:   I have been getting similar medications from another internet source and it has been a miracle.   I have been on CBD capsules and edibles for two months now and the results have been amazing.  Instead of living in level 5 – 6 pain around the clock (the dull ache inside the bones as well as the occasional sharp stabbing pains in the muscles and muscle cramps and spasms), I now down to a fairly stable level 2.  The pain is so much milder now that I can push it out of my mind and keep going with the good things in life.  My good results come from using a high CBD level medication with little or no hallucinogenic side effects.  It makes me so sad to see one posting after another talking about the problems with taking the prescription pain killers.  I, too, was hesitant to try something other than a doctor's prescription to a big pharma produced pill – and at the age of 79 it was quite a daring adventure for me.  But I was in such agony most of the time, it was find a solution or just lose the will to keep trying to stay alive. It was my two sons (both middle-aged men, highly successful, and well-regarded in the communities where they live) who convinced me to try based on their own positive experiences coping for years with school sports injuries using holistic medications.

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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Very much so. 2 years with my BP injury and still no resolution. I’m, unfortunately, on narcotics. No medical relief….. YET.

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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@saragroves

It would be nice if we could have something other than narcotics for our pain. But, for some of us, it’s the only thing that helps. So, I guess it’s a mixed blessing. Bad because of the abuse of them, good because they work. I don’t apologize for taking what I do – I take a relatively low dose of MScontin – as long as it gives a level of relief and doesn’t interfere with my ability to function. My doctors exhausted all the other possible meds, and the morphine is the only thing that touched the neuropathy pain.

Jim

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Yes. I have had to quit driving because I cannot really tell where my feet are, and I have PN all over my body and limbs. From Amyloidosis. I always just thought I got it from eating nettle salad. Or maybe using the wrong side of the knife to spread the peanut butter, or maybe put the peanut butter on the bread after the blackberry jam. But I know I have a good case of it.

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I had a good appointment today with the neurologist. The ENT doctors recommended that I talk with him about the issues I went to them for. I’m going to have more tests that could tell me if other problems I’m having are connected with neuropathy. Then we can figure out if we just treat the symptoms or if something can be done to treat the underlying cause. Some of the problems are numbness and aching in my hands, occasional dizziness with a loud buzzing, swallowing, esophageal dysmotility, urinary issues, ED, tripping, balance… We’ll see.

Jim

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@jimhd

I had a good appointment today with the neurologist. The ENT doctors recommended that I talk with him about the issues I went to them for. I’m going to have more tests that could tell me if other problems I’m having are connected with neuropathy. Then we can figure out if we just treat the symptoms or if something can be done to treat the underlying cause. Some of the problems are numbness and aching in my hands, occasional dizziness with a loud buzzing, swallowing, esophageal dysmotility, urinary issues, ED, tripping, balance… We’ll see.

Jim

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I had neuropathy for two years, experimented with turmeric(still use today) effective; and two years of communication with new friends in Philippines(on e mail)…effective.  Yes, visit with ER and Neurologist, did not find a mass but the Neurologist did a full assessment, re assessed my MRI and wisely alerted me, "if chronic headaches", see me again.  This visit with neurologist was in relation to the dizziness that emerged two years ago, seems similar to my bout with neuropathy. I believe in wise use of alternative and conventional medicine, so far, effective.  JIM>>>

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pk – I was diagnosed with Peripheral Neuropathy as well – I have seen a neurologist who asked me to see another nerve doctor -I have this appointment tomorrow. During the day I have a lot of burning pain in my upper right thigh but I don’t want to take any pain medicine since I am still working full time. Do you take a Turmeric pill or do you cook with it? It sounds like it is helping you with your pain? I don’t have any headaches but having a lot of pain in both of my legs. I have a small tumor on the L5 nerve root and have arthritis & herniated disk on lower back so I’m sure it has a lot to do with it. This past winter I made a delicious broth with it but need to start using it again. Very curious about the Turmeric. THANK YOU!!

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@jimhd

I had a good appointment today with the neurologist. The ENT doctors recommended that I talk with him about the issues I went to them for. I’m going to have more tests that could tell me if other problems I’m having are connected with neuropathy. Then we can figure out if we just treat the symptoms or if something can be done to treat the underlying cause. Some of the problems are numbness and aching in my hands, occasional dizziness with a loud buzzing, swallowing, esophageal dysmotility, urinary issues, ED, tripping, balance… We’ll see.

Jim

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@jimhd We appreciate the update, Jim. I’m wishing you well and continue to pray for you. Your sharing is so helpful to our group.

Teresa

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@pkindron

pk – I was diagnosed with Peripheral Neuropathy as well – I have seen a neurologist who asked me to see another nerve doctor -I have this appointment tomorrow. During the day I have a lot of burning pain in my upper right thigh but I don’t want to take any pain medicine since I am still working full time. Do you take a Turmeric pill or do you cook with it? It sounds like it is helping you with your pain? I don’t have any headaches but having a lot of pain in both of my legs. I have a small tumor on the L5 nerve root and have arthritis & herniated disk on lower back so I’m sure it has a lot to do with it. This past winter I made a delicious broth with it but need to start using it again. Very curious about the Turmeric. THANK YOU!!

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Here’s a great website for making golden paste (turmeric) – http://turmericlife.com.au/turmeric-recipes-golden-paste/. It also has a lot of other turmeric information. I haven’t made it yet but got the link to the site from some friends that make it and even give it to pets. There are different recipes for use.

John

Liked by Darlia, barbarn

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@jimhd

I had a good appointment today with the neurologist. The ENT doctors recommended that I talk with him about the issues I went to them for. I’m going to have more tests that could tell me if other problems I’m having are connected with neuropathy. Then we can figure out if we just treat the symptoms or if something can be done to treat the underlying cause. Some of the problems are numbness and aching in my hands, occasional dizziness with a loud buzzing, swallowing, esophageal dysmotility, urinary issues, ED, tripping, balance… We’ll see.

Jim

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@jimhd All of your symptoms might be connected to small fiber polyneuropathy. I suggest that you go online to www. Neuropathycommons.org and read about the research being done by Dr. Louise Oaklander. Good luck!

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@jimhd

I had a good appointment today with the neurologist. The ENT doctors recommended that I talk with him about the issues I went to them for. I’m going to have more tests that could tell me if other problems I’m having are connected with neuropathy. Then we can figure out if we just treat the symptoms or if something can be done to treat the underlying cause. Some of the problems are numbness and aching in my hands, occasional dizziness with a loud buzzing, swallowing, esophageal dysmotility, urinary issues, ED, tripping, balance… We’ll see.

Jim

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@steeldove

Thanks for the information. I just saw the neurologist this week, and he’s ordered tests to see if what I have is small fiber neuropathy, and also if it’s autonomic neuropathy. I should have some answers in a few weeks.

Jim

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@lynsorensen

RLS = Restless Leg Syndrome. Best thing you can do at this point is to Google that term and read about it in depth. Especially the pros and cons on the two main medications used to treat it: Requip and Mirapex. I have done both of them and I am on Mirapex now for several years.

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I have the RLS and I wonder.. anyone else have it in their hands and arms? It’s very frustrating! I do!
Anyone else just literally fall asleep randomly. I just check out without warning!
Darlia

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@darlia

As a matter of fact I have recently been diagnosed with the FGFR3 ANTIBODY (rare) which is the CAUSE of my peripheral neuropathy now I am told.
Also have Gastroparesis because of this ANTIBODY. Neurotically my stomach nerves don’t work properly and it takes my stomach 5-6 x longer to digest
I posted a post titled FGFR3 ANTIBODY, for those interested, please go there and leave me your comments.
Just knowing the CAUSE now starts to feel a little better.

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For anyone diagnosed as idiopathic Neuropathy. Have your Dr test for the FGFR3 ANTIBODY. This is supposedly the cause of many people’s Peripheral Neuropathy but wont know it until it’s tested. Blood test

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@lynsorensen

RLS = Restless Leg Syndrome. Best thing you can do at this point is to Google that term and read about it in depth. Especially the pros and cons on the two main medications used to treat it: Requip and Mirapex. I have done both of them and I am on Mirapex now for several years.

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@darlia

Time for a sleep study. What you describe is called narcolepsy.

Jim

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