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otolorin

Peripheral Neuropathy In Parkinson

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otolorin    30

Hi everyone,

I just want to know if anyone has experienced numbness and tingling pain in the most affected arm or leg,if so what do you take to ease these symptoms.Currently on C/L therapy.

Your response would be appreciated.

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papa57    61

Sorry I don't have an answer for you. Have in the past numbness in my right hand along with what appeared like poor circulation and swelling. That's gone away. Maybe due to regular cardio exercise. My right foot has a general low level of numbness. I don't really notice it unless I think about it. It might be totally unrelated to PD. That leg was banged up when I was a kid…..so maybe its nerve damage?

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Serenity Now    19

Otorlorin,

I have no dx yet, except neuropathy, but i get tingling and numbing mainly on the side that has pd symptoms of no arm swing, limping, shoulder pain and more recently stiff neck thats almost constant.  Plus, I get burning pains in the face on that side and now my chin and jaw get numb, which I know is related to my neuropathy.

My young neuro, who I think was a resident neuro and who wasn't much older than Doogie Howser, didn't care about half my pd symptoms, and he dx me with neuropathy.  Yet I never had EMG to determine which type I have.  

He advised me to take Alpha Liptic Acid, CoQ10 (aka Coenzme Q) and Carnitine.  Those have helped to lessen the neuropathy issues.  I wish i had something that helped with my loss of smell, fatigue, sleep issues of insomnia, weird dreams and kicking and hiting wall when asleep and other symptoms that could be from PD or something else. 

 

 

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francesblo    3

I have the tingling and numbness on right side.  When I am rigorous about exercise, it recedes.  When I write the alphabet with my right foot it goes away for awhile. 

By the way, if your doctor "didn't care about half my pd symptoms," then you need a new doctor.  PD is full of baffling and annoying symptoms - you need someone in your corner.

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TexasTom    716

It has been getting worse. :(

A friend was over last year, and during a football game there was a Lyrica advertisement. He quipped about another "made up disease". It was the straw that broke the camels back and I lost it. Even my wife was shocked, but it is just beyond description. Closest I can explain it it is it feels like my feet have been submerged into boiling oil. I'll wake up from the pain, flip the covers off to see everything is OK. I kept thinking "did I step into a fire ant mound?" when this started a few years ago.

Gabapentin is working to help "mute" some of it. Intense work outs help. If I can "tune it back" it helps to go walking/hiking.  If I am just sitting there watching  TV, it seems worse. Middle of the night, yep only help is to get up and walk around. Walking outside on cold concrete helps with the feet. 

Had a great weekend, active at a Golden Retriever meet, Parkinsons Pot Luck, and spent all day Sunday in the shop doing wood working.  As long as I remain active, it helps. Gabapentin helps me remain active. 

 

 

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lethe    199

I posted this last september regarding the positive effects from my taking tai chi

 


"Neuropathy- for the last 3 years or so I have had neuropathy - a strong numbness in my thighs and ankles, lack of feeling in several layers.  I realized in the last month that I have almost all feeling restored in my thighs and improvement in my ankles."

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DaveN    430

Have any of you had your back examined?  I have peripheral neuropathy completely unrelated to my Parkinson's.  An EMG and Nerve conduction study can confirm where the nerve damage is coming from.  Mine is from a disc that exploded in my back many years ago.  It was like a hand grenade went off in my back becuase the disc was mostly calcified when it happened.  I digress, let a doctor determine what's the best course of action.  Lyrica works a little better than Gabapentin.  I'm unable to take either but have tried them and they were helpful except for the side effects.

Dave

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otolorin    30

@Serenity Now as per insomnia and other problems with sleep,you can register at the parkinson's disease foundation website for a seminar coming up in June,it will be PDF online.It is to be presented by one of the parkinson disease experts,and you will be able to learn about tips on how to manage sleep problemsAccording to some motor disorder specialists,the tingling and numbness is related to the pd,due to nerve root compression from muscle rigidity,considering nerve conduction velocity tests,MRI,and other tests are done to rule out some other conditions that might present with neuropathy.I supposed if the tingling/numbness is caused by dystonia,then.these symptoms should be eased by dopa meds,but the symptoms fluctuates,even during "on" periods."Serenity Now",how often do you get tremor and what meds are you on ?I just started C/L therapy after trying dopa agonists for about 2 half mths,without success due to sleepiness side effects.According to" DaveN" one have to consider side effects of additional Lyrica or Gabapentin.But will discuss with my MD about the supplements stated by "Serenity Now"It is better to reduce side effects as much as possible.Unfortunately one size does not fit all,concerning PD medications..it would have been nice if there is one drug that can treat all the symptoms of PD.Hope is on the horizon.Thanks for all your updates,let us keep fighting,no giving up!.

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New normal    1,275

Both DH and I have neuropathy pain in our feet and lower legs.  DH feet are so painful he can hardly walk.  I've ordered hush puppies shoes hoping we can get some orthotics from podiatrist for him.  I have pins and needles infeet now spreading up to calves..  his emg showedseveral neuroathies.

Like Tom, cold floors feel good.  We figure it is another anoyance to steal our focus.

good luck to others.....

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Serenity Now    19

Otolorin,

Thanks for suggestion, but not sure if I'd be eligible for seminar since I have no dx yet.  I've tried a lot of tips to sleep that are given on different websites, but after I fall asleep, I'm up hours later.  That's been like this for many years.  I don't drink anything with caffeine nor do I smoke cigarettes. 

You make an interesting point about PD and tingling/numbing. I've sometimes wondered if neuro was right on diagnosing me with neuropathy.  Yet, it makes sense why I have diminished reflexes on one side, the inability to feel the vibration tool and the burning pain in my face. 

I would do an EMG/NCV or other tests, but I want someone who I'd have confidence in. The neuro only cared about my constipation and neuropathy issues.  He didn't think it was odd my arm stopped swinging in summer, nor did he care abour my abnormal tongue movement, my blurry vision, etc. 

I did have a resting tremor in Dec that, but it only lasted a few weeks.  I was not agitated or stressed.  I'm not on any meds, nor have I ever been. 

 

Francesblo,

I'm seeing MDS at the end of the month who also specializes in sleep disorders. Thanks. 

 

Dave,

Good suggestion about back examination.  Thanks.

Edited by Serenity Now

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TheCount    9
On 5/1/2017 at 10:13 AM, TexasTom said:

It has been getting worse. :(

A friend was over last year, and during a football game there was a Lyrica advertisement. He quipped about another "made up disease". It was the straw that broke the camels back and I lost it. Even my wife was shocked, but it is just beyond description. Closest I can explain it it is it feels like my feet have been submerged into boiling oil. I'll wake up from the pain, flip the covers off to see everything is OK. I kept thinking "did I step into a fire ant mound?" when this started a few years ago.

Gabapentin is working to help "mute" some of it. Intense work outs help. If I can "tune it back" it helps to go walking/hiking.  If I am just sitting there watching  TV, it seems worse. Middle of the night, yep only help is to get up and walk around. Walking outside on cold concrete helps with the feet. 

Had a great weekend, active at a Golden Retriever meet, Parkinsons Pot Luck, and spent all day Sunday in the shop doing wood working.  As long as I remain active, it helps. Gabapentin helps me remain active. 

 

 

This is exactly what happens to me, I was dx with neuropathy about 8 months before my PD dx and when I asked if they were related I was told "maybe". I have been on gabapentin for quite a while (1200 mg at bedtime) however all I feel it does is "slightly" take the edge off. When I am up and moving/exercising the pain lessens however just like you when I sit down to relax the pain comes at me like wildfire. 

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ellaangel2    191

Texas Tom - Your story reminds me of a conversation I overheard while in a restaurant.  Man was ranting and raving about how Alzhimers was a  made up disease created by Dr's that want to make more money!!  I had all I could do to hold myself back from letting him have it!!

Easy to say, when you or a loved one is not suffering from the disease.........although, even then, should not be "easy to say."  Just plain ignorance and lack of sensitivity, no others words for it!

As they say, "one "gift" having health problems give us is empathy."

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Quietstill    450

We do have some success with deep tissue massage.  Yes, I know, it is yet another uncovered medical expense.  IF DH gets a half hour massage every 2 weeks, the numbness and tingling in both hands goes down quite a bit. 

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