Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@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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If you have this antibody is there a treatment for the PN ?

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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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Hi, Darlia. Two quick notes. 1. I agree with @jimhd. Sleep Study and potential narcolepsy. However, it could be syncope from a variety of cardiac problems, including sensori-motor or other nerve involvements, or cerebellar cortex amyloid amorphous deposits. 2, The RLS in hands and arms, like mine, could be same stuff. Whatever, MRI heart, CT brain, EMG carpal tunnel. Mine is, we believe, turning out to be multiple disorders and causes linked together. I figure I have at least one disorder for each of my great grandchildren, plus one for each attractive woman in my life. Might even be one that is named from my ancestral family. Evans Syndrome! Like Amyloidosis but without the biopsy. That way I can say I deserve everything I am getting. (picture here a smiley. At least I am getting something good out of all this.)

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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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Happy that you found something that works I did the soap no work i.e.-did the tens unit don ‘t know why but ended up in emergency room painful stiff neck did not work for me…

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i have chemotherapy induced neuropathy in both my feet. I do not want to go on the normal pain meds as the pain is not a problem but they are just numb. I cannot feel them, temperature, if I cut myself, etc. It has been a year since I stopped chemo. I went to my podiatrist and he recommended laser treatments. ha s anyone tried this ? I see those laser clinics for foot, back or just about anything else you want treated. No side effects however, FDA approved but not covered by insurance. He kind of turned into a salesman pretty quick and I am wondering if anyone has tried this. I know the maxchines are expensive. He said only three to six treatments and i will know if it is going to work.
Thanks for listening, Carol

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@caf132

i have chemotherapy induced neuropathy in both my feet. I do not want to go on the normal pain meds as the pain is not a problem but they are just numb. I cannot feel them, temperature, if I cut myself, etc. It has been a year since I stopped chemo. I went to my podiatrist and he recommended laser treatments. ha s anyone tried this ? I see those laser clinics for foot, back or just about anything else you want treated. No side effects however, FDA approved but not covered by insurance. He kind of turned into a salesman pretty quick and I am wondering if anyone has tried this. I know the maxchines are expensive. He said only three to six treatments and i will know if it is going to work.
Thanks for listening, Carol

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@caf132

Carol,

I don’t know the answer to your question, but I see that there’s a discussion about laser treatment in this group. I’m kind of new at this, so I don’t know how to give you a link, but I see at least two discussions in the neuropathy group. Let me know if you can’t find it.

Jim

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@caf132

i have chemotherapy induced neuropathy in both my feet. I do not want to go on the normal pain meds as the pain is not a problem but they are just numb. I cannot feel them, temperature, if I cut myself, etc. It has been a year since I stopped chemo. I went to my podiatrist and he recommended laser treatments. ha s anyone tried this ? I see those laser clinics for foot, back or just about anything else you want treated. No side effects however, FDA approved but not covered by insurance. He kind of turned into a salesman pretty quick and I am wondering if anyone has tried this. I know the maxchines are expensive. He said only three to six treatments and i will know if it is going to work.
Thanks for listening, Carol

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Hi @caf132,

Here are a few discussions on Connect about laser therapy that @jimhd noted:
– Laser Therapy for Neuropathy https://connect.mayoclinic.org/discussion/neuropathy-1/
– Use New Article About Treating Peripheral Neuropathy https://connect.mayoclinic.org/discussion/use-new-article-about-treating-peripheral-neuropathy/
– Do you think mproving circulation helps with pain? https://connect.mayoclinic.org/discussion/do-you-think-mproving-circulation-helps-with-pain/
– Has anyone tried microcirulation therapy for wound healing? https://connect.mayoclinic.org/discussion/has-anyone-tried-microcirulation-therapy-for-wound-healing/

I’m also tagging @crystalgal @mikween @crystalgal, @dbentley @swiss, @hoot as they have all discussed laser therapy in some form with regards to their neuropathy diagnosis.

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Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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I’ve never heard of it – sounds like it might be trouble swallowing bu what is it really?

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@mfobrien36 Were you told that it’s a symptom of or connected to small fiber polyneuropathy?

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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Hi @darlia
There are a couple of discussions with several Connect members talking about esophageal motility issues. Check them out here:
– Esophagus issues https://connect.mayoclinic.org/discussion/esophagus-issues/
– Non Specific Esophageal Motility Disorder Caused by Beta Blockers https://connect.mayoclinic.org/discussion/non-specific-esophageal-motility-disorder-caused-by-beta-blockers/

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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@darlia

I have esophageal dysmotility, as well. As the bolus (bite of food) travels down the esophagus, rings fire in sequence to move it to the stomach. Those rings (in my case, at least) fire at random, so the bolus gets squeezed down, but then another ring squeezes it upward, continuing this back and forth until the bolus finally gets to the bottom and the door opens to allow it to enter the stomach. In addition, the bolus stops at random places, sometimes stops in the bottom waiting for the door to open. There’s a real risk of aspirating food and liquid.

Another thing that happens is that mucous builds up and slows down the process even more.

A related problem that I have is that the base of my tongue doesn’t work right, so food or liquid may leak while chewing, and it’s not strong enough to create sufficient pressure in the esophagus to propel the bolus through the esophagus.

So, are you going to see a speech therapist or speech pathologist? Sounds strange, but they can give you exercises and a lot of helpful information that will make swallowing easier and safer.

Time for supper, so gotta go.

Jim

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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Hi Jim….gailfaith here again, but on a different subject! I got to thinking about you all that have esophagus problems. What happens when and if you have to vomit? I can’t help but wonder as I’ve been told that there may come a time with my Myotonic Dystrophy that swallowing may become a problem.

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You responded to the wrong “expert” – I have no idea either what it is or what it’s connected to … I asked the question – what is it?

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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I do not use any Beta Blockers

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@darlia

Today I was told I also have Ineffective Esophagial Motility. Anyone else?

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@jimhd
Good info! I have an appt with my Motility Gastro Dr but not til Dec. I’ve been dealing with this problem for YEARS! THEY finally did the 24 hr Manometry and PH study tests and that’s how they found out. I was just told yesterday. I have been struggling with the choking on food, liquid or saliva (aspirating too) for years! It’s very scary when I catch this, choke and can’t catch my breath as I’m choking! Tell me on please, which specialists other than the Speech one, should I be seeing? The one I have is INEFFECTIVE ESOPHAGIAL MOTILITY.

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