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Ann broussard
@user_ch98d0b5c

Posts: 20
Joined: Jun 03, 2018

People with non diabetic neuropathy

Posted by @user_ch98d0b5c, Mon, Aug 6 10:30am

Would. Like to find people with this issue

REPLY

Hello @user_ch98d0b5c — I read from your earlier post that you do not know what the cause is for your peripheral neuropathy. I also have idiopathic small fiber peripheral neuropathy. They suspect hereditary but don't know. You also mentioned you have an upcoming appointment at John Hopkins with Dr. Hoke in September. I know it must be frustrating waiting and wanting some answers.

@user_ch98d0b5c have you found anything that helps with the pain?

I've found that I always wear socks, even at night. I mainly do this because I can't tell if my feet have been injured when I step on something walking around the house. I've found that socks made with bamboo fiber are really soft, stretchy and very easy to put on and take off. I guess they probably wouldn't help you if you can only wear flip flops. Have you tried any kind of shoe that doesn't cause you pain?

I was not sure by the title of your discussion if you were trying to locate members who do not have diabetic neuropathy or that do have diabetic neuropathy?

John

@user_ch98d0b5c – Well, I fit that condition…idiopathic peripheral neuropathy. Unlike John, mine comes with a ton of pain. The possible cause may be previous injuries like falling off horses and down mountains. I am happy to offer what does and does not work for me to provide some relief. Just let me know and I can send you a private message or post for all.

Please keep us updated if finding a relief !! Good Look to you !!

@marinelastef

Please keep us updated if finding a relief !! Good Look to you !!

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I am shocked that no one can think of a dr who has been helpful to them. Is it against the rules?

Liked by barbarn, marystefy

Me too !!

Hello,

I also have inherited/idiopathic peripheral neuropathy. I have had symptoms that have progressed for decades which I had no idea were PN for decades, like being able to walk on snow, hold hot things and to sweat excessively. More recently my feet have become painfully numb, with tingling and hot burning glass being common states. The a little over a year ago my hands became painfully numb, the teeth on my lower right jaw began to go numb and I began loosing hearing in the low tone in my right ear. In 8 months I lost 60% of the hearing of low tones. Unfortunately, old age deafness is the high tones and that is what hearing aids are made for. For low tone deafness, the only device is a microphone that I give to the person I am talking to. I have another hearing test in a couple months and I'm sure I will have lost more hearing.

Getting a good doctor is hard but there are some out there. Dr. Oaklander at MGH does 1/2 research 1/2 patients and hasn't been accepting new patients when I have inquired. However, she is looking at the use of IVIG for people with idiopathic PE and no positive results for the standard autoimmune or inflammatory tests. My neurologist at MGH, Reza Seyedsadjadi is great at working with me to figure out what is going on, being thorough in his testing and making sure that all available tests are used.

I also highly recommend the pain clinic at Newton Wellesley Hospital, they checked my meds, adjusted them and then tweaked them for the most current pain relief mechanism.

I have also seen neurologists at Mayo clinic and Brigham and Women's Hospital who were excellent and tested everything that MGH had missed. However, the wait times to get in can be crazy so I am not advocating that you see them, I waited 14 months to see an autonomic PE expert at the Brigham, that is not reasonable.

Good luck in your search I would love to stay in touch!

Mark

@arcticmark

Hello,

I also have inherited/idiopathic peripheral neuropathy. I have had symptoms that have progressed for decades which I had no idea were PN for decades, like being able to walk on snow, hold hot things and to sweat excessively. More recently my feet have become painfully numb, with tingling and hot burning glass being common states. The a little over a year ago my hands became painfully numb, the teeth on my lower right jaw began to go numb and I began loosing hearing in the low tone in my right ear. In 8 months I lost 60% of the hearing of low tones. Unfortunately, old age deafness is the high tones and that is what hearing aids are made for. For low tone deafness, the only device is a microphone that I give to the person I am talking to. I have another hearing test in a couple months and I'm sure I will have lost more hearing.

Getting a good doctor is hard but there are some out there. Dr. Oaklander at MGH does 1/2 research 1/2 patients and hasn't been accepting new patients when I have inquired. However, she is looking at the use of IVIG for people with idiopathic PE and no positive results for the standard autoimmune or inflammatory tests. My neurologist at MGH, Reza Seyedsadjadi is great at working with me to figure out what is going on, being thorough in his testing and making sure that all available tests are used.

I also highly recommend the pain clinic at Newton Wellesley Hospital, they checked my meds, adjusted them and then tweaked them for the most current pain relief mechanism.

I have also seen neurologists at Mayo clinic and Brigham and Women's Hospital who were excellent and tested everything that MGH had missed. However, the wait times to get in can be crazy so I am not advocating that you see them, I waited 14 months to see an autonomic PE expert at the Brigham, that is not reasonable.

Good luck in your search I would love to stay in touch!

Mark

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Is MGH stand for mass general hospital.?sounds
like a good dr if she is willing to stick with you and try to help . All my guys just keep sending me on to Neurosurgeon who think both hand and feet probably coming from stenosis, but will not believe any of them so of course they pass me.on.My neurologist sent me to them. Going to Hopkins in sept but that is huge institution so not looking forward to that . Talk about who could care less . I was just hoping they had better medical devices an test to help me figure if this is small fiber nueropathy.

I have non diabetic polyneuropathy & the fatigue is crushing. I can do very little but sleep. Is there treatment for this relentless exhaustion? Thanks. Elden

@elden

I have non diabetic polyneuropathy & the fatigue is crushing. I can do very little but sleep. Is there treatment for this relentless exhaustion? Thanks. Elden

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Have extreme fatigue but just below what I can ignore so feel exhausted every day but don't work to change just that.

@artscaping

@user_ch98d0b5c – Well, I fit that condition…idiopathic peripheral neuropathy. Unlike John, mine comes with a ton of pain. The possible cause may be previous injuries like falling off horses and down mountains. I am happy to offer what does and does not work for me to provide some relief. Just let me know and I can send you a private message or post for all.

Jump to this post

I would very much appreciate hearing about what works for you, as would a lot of us. Thanks. Arnrob

Liked by marystefy

@marinelastef

Please keep us updated if finding a relief !! Good Look to you !!

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I can testify that, in the 3 states in which I lived, not one doctor could come up with ANY solution to ease my pain, although one in particular worked her heart out trying.

@marinelastef

Please keep us updated if finding a relief !! Good Look to you !!

Jump to this post

@user* I've been thinking about no one being able to think of a dr who has been helpful to them – and – there must be so many kinds of PN, so many causes, there must be equally as many treatments, and to find the one that works for a particular individual might be like looking for the proverbial needle in haystack? or, perhaps as many have said – there is no treatment!!! You do have to be your own advocate – keep looking, trying new things, sharing what you have learned and what others have learned.

@marinelastef

Please keep us updated if finding a relief !! Good Look to you !!

Jump to this post

@user_ch98d0b5c, I don't believe it's against the rules to name a doctor who has helped you in some way. I am thinking it's more along the line of what @barbarn is suggesting. There are so many types of PN and no one treatment works for everyone. That said if I found a doctor that "fixed" the numbness in my PN I would certainly give them the credit. I have found supplements that help but they do not cure PN and they may or may not work for everyone.

So I would just like to add, keep asking questions and sharing what you find if something works for you. We are all on this journey together.

John

@elden

I have non diabetic polyneuropathy & the fatigue is crushing. I can do very little but sleep. Is there treatment for this relentless exhaustion? Thanks. Elden

Jump to this post

Elden @elden — welcome to Connect. Fatigue can be crushing. Have you tried any treatments or been recommended any treatments by your doctor? Have you ever been tested for sleep apnea? The reason I ask is while I don't feel I have chronic fatigue I have been tired a lot during the daytime and recently while being treated for another condition was tested and found out I have obstructive sleep apnea. I was surprised at the statistics of how many people have it and do not know they have it. I certainly didn't know and didn't think I had it. You might want to check out the following discussions:

Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Groups > Autoimmune Diseases > Autoimmune Diseases and Fatigue
https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/

Groups > Sleep Health > Sleep Apnea and CPAP machines
https://connect.mayoclinic.org/discussion/sleep-apnea-29d741/

John

Hello again John. How are you tested for sleep apnea ? Do you have to be hospitalized for it ? And what did you do to improve it ? I feel like I have an obstruction on my left side after the nerve blocks . Thank you !!

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