1. < Neuropathy
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Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

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gailfaith | @gailfaith | Sep 19, 2016
In reply to @aliskahan "Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who..." + (show)
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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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Hi Joannem, if you saw my note on putting soap UNDER the sheet for RLS no need to do anything to the soap. I sleep in a double size bed, but the intact BAR of soap is even on the other side of the bed. It is the same bar I've used for years. The bar is now about half the size it was originally, but that is only from it being in the bed for so many years. Not sure but maybe 20, 30 or more years! As I mentioned, the MD who wrote that i column where that suggestion was, admits no one knows why it works, but many people responded that it surely workesfor them. I have no idea at this time the brand of soap I used. @gailfaith

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Colleen Young, Connect Director | @colleenyoung | Sep 19, 2016
In reply to @billh "Rabbit 10, I was first diagnosed with idiopathic peripheral neuropathy about 5 years ago by a..." + (show)
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Rabbit 10, I was first diagnosed with idiopathic peripheral neuropathy about 5 years ago by a neurologist. In the process, it was also determined that I have M-GUS which stable. My feet are numb and tingly with pain caused by especially temperature changes. To minimize any painful tingling at night, I sleep with a fresh pair of socks on my feet. I was started on Gabapintin 300 mg, 3 x per day. It caused restless legs syndrome and I could not sleep at night. I was given Trazadone 50 mg at bed and I sleep very well now. The neuropathy has spread to my hands and have mostly numbness and little sensory feeling with respect to extreme temperatures. For example I can touch something hot like a hot potato from the oven and have a slow response to the temperature and then the pain from the burn goes away within a minute. I am taking 900 mg, 3x per day plus Cymbalta to treat the neuropathy. I pray that each find the right treatment to relieve the pain.

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Billh - you may also be interested in connecting with other Connect members who have MGUS in this group discussion
- MGUS http://mayocl.in/2cKG3tv

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woods | @woods | Sep 19, 2016
In reply to @woods "Went to Internist yesterday with complaint of pain interrupting sleep numerous times. Rx: Elavil ( Amitriptyline)..." + (show)
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Went to Internist yesterday with complaint of pain interrupting sleep numerous times. Rx: Elavil ( Amitriptyline) 25 MG.
Slept soundly with only one trip to bathroom. Groggy for about an hour after getting up, but fully alert after about an hour.
Promising !

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dosage of 25 mg; 1 tablet daily at bedtime. No heart issues. After 3 nights, sleep is much improved and pain is not an issue. Yes, side effects are lengthy, but it seems every med has them...just have to be careful. I'll report progress after 2 weeks..so far so good. 

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woods | @woods | Sep 19, 2016
In reply to @billh "Rabbit 10, I was first diagnosed with idiopathic peripheral neuropathy about 5 years ago by a..." + (show)
Profile picture for Bill H @billh

Rabbit 10, I was first diagnosed with idiopathic peripheral neuropathy about 5 years ago by a neurologist. In the process, it was also determined that I have M-GUS which stable. My feet are numb and tingly with pain caused by especially temperature changes. To minimize any painful tingling at night, I sleep with a fresh pair of socks on my feet. I was started on Gabapintin 300 mg, 3 x per day. It caused restless legs syndrome and I could not sleep at night. I was given Trazadone 50 mg at bed and I sleep very well now. The neuropathy has spread to my hands and have mostly numbness and little sensory feeling with respect to extreme temperatures. For example I can touch something hot like a hot potato from the oven and have a slow response to the temperature and then the pain from the burn goes away within a minute. I am taking 900 mg, 3x per day plus Cymbalta to treat the neuropathy. I pray that each find the right treatment to relieve the pain.

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Was originally diagnosed with Multiple Myeloma because of presence of M-Protein and skull lesions. Downgraded to MGUS when lesions, on second reading, were described as "not consistent with multiple myeloma". Only 20% chance of progression to MM. No other blood abnormalities.

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Colleen Young, Connect Director | @colleenyoung | Sep 19, 2016
In reply to @chefbrown "Hello Everyone, I have PN in feet and legs and restless leg as well. The Neurologist..." + (show)
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Hello Everyone, I have PN in feet and legs and restless leg as well. The Neurologist said that the two often go together. The PN is from Multiple sclerosis. I started Medical Marijuana a few years ago and was surprised at how well it worked for the pain and numbness as well as calming the RL. also another benefit is it helps me sleep better. There are different strengths and different ways to take it not just smoking. I use a vaporizer as it doesn't burn the material so I get better results without irritating my COPD. There are strains that don't get you high but work medically. This with 1200ml Gabapentin have made my life livable again as the treatment helps MS as well. I use this because nothing else seemed to work for me. Good luck all.

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@chefbrown, you likely have valuable experiences that you could share with Connect members talking on these 2 discussions:
- Chronic pain and medical marijuana http://mayocl.in/2c2i9Hx
- CBD http://mayocl.in/2cBCdDn

People are asking questions of people who have experience (positive or negative) with medical marijuana for pain.

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tbeckys | @tbeckys | Sep 20, 2016

Hi, my name is Terry and I've had neuropathy in both feet and hands and half way up calves of legs for 5 + years.
Is there any things I can try for it. Thanks for listening.

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JohnWBurns | @johnwburns | Sep 20, 2016
In reply to @tbeckys "Hi, my name is Terry and I've had neuropathy in both feet and hands and half..." + (show)
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Hi, my name is Terry and I've had neuropathy in both feet and hands and half way up calves of legs for 5 + years.
Is there any things I can try for it. Thanks for listening.

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Hi and welcome.
What, if anything, have you already tried for it?
Do you have any diagnosis as to what caused it? If so, is that condition being treated?

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tbeckys | @tbeckys | Sep 20, 2016
In reply to @tbeckys "Hi, my name is Terry and I've had neuropathy in both feet and hands and half..." + (show)
Profile picture for tbeckys @tbeckys

Hi, my name is Terry and I've had neuropathy in both feet and hands and half way up calves of legs for 5 + years.
Is there any things I can try for it. Thanks for listening.

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I have Diabetes, Lupus, R.A., Fibromyalgia, Hypothyroidism, Heart disease. IBS and many more problems.

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JohnWBurns | @johnwburns | Sep 21, 2016
In reply to @tbeckys "Hi, my name is Terry and I've had neuropathy in both feet and hands and half..." + (show)
Profile picture for tbeckys @tbeckys

Hi, my name is Terry and I've had neuropathy in both feet and hands and half way up calves of legs for 5 + years.
Is there any things I can try for it. Thanks for listening.

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Sorry to hear that you have so many overlapping ailments in addition to peripheral neuropathy. It look like you are a candidate for being diagnosed with Familial Autoimmunity. That said, of the cluster of things you list, diabetes jumps out as the primary risk factor for peripheral neuropathy. With this many ailments seems like you have to play the odds.

Short notation:
Familial association between type 1 diabetes and other autoimmune and related diseases.
http://www.ncbi.nlm.nih.gov/pubmed/19543881
"RESULTS:
Among a total of 450,899 patients, 21,168 were diagnosed with type 1 diabetes. Familial cases amounted to 10.3% of all type 1 diabetes patients. SIR for type 1 diabetes was 8.23 in offspring of affected parents, 11.92 in singleton siblings, 39.22 in multiplex families and 21.88 in twins; the calculated risk for monozygotic twins was 32.33. Type 1 diabetes in offspring was associated with 13 diseases in parents, including Addison's disease (SIR 2.41), asthma (1.38), coeliac disease (2.73), Graves' disease/hyperthyroidism (1.86), Hashimoto disease/hypothyroidism (2.35), pernicious anaemia (3.09), primary biliary cirrhosis (3.63), rheumatoid arthritis (2.12), sarcoidosis (1.62), systemic lupus erythematosus (2.04), ulcerative colitis (1.23) and Wegener's granulomatosis (2.12)."

but I'm not a doctor so I can't diagnose. You are being seen by specialists, primarily a rheumatologist, endocrinologist and neurologist right?
What treatments are you on?
Is the diabetes in good control?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 22, 2016

Peripheral neuropathy is definitely a topic of great interest affecting many Connect members. @johnwburns has started several off-shoot discussions around specific issues and peripheral neuropathy. Please see these discussion threads and join in with your thoughts and experiences:

* Peripheral Neuropathy - Stretching and Exercise http://mayocl.in/2d4r1iC
* Peripheral Neuropathy - Everything cures it and nothing cures it http://mayocl.in/2cOYaCJ
* Peripheral Neuropathy and the Spine http://mayocl.in/2cOZ41O

Given these and a number of other discussion threads dedicated to peripheral neuropathy, it might be time to start a group specifically dedicated to the topic.

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