Peripheral neuropathy

[tobykeith]

I was diagnosed with Parkinson's one year ago. In December started having severe pain in my left leg. My primary care doctor just ordered a nerve study which confirms peripheral neuropathy. Does anyone have this also? If so, what treatment or medications are used? My neurologist cannot see me for several months. I have had a problem finding a neurologist that will work with me. I have an appointment with another neurologist in August,. Any ideas for some pain relief will be appreciated.

[steph02]

Have you tried an electronic muscle stimulator I bought one a few months ago called circulationmaxx and it really did help with some terrible leg cramps that I used to get and still do occasionally. this one cost about £75 but it was well worth it.

I don't profess to know why it works but it does for me.

[isis6361]

Do you have any other condition besides Parkinson's as this is not a usual sign of Parkinson's. Usually associated diabetes or smokers? Dystonia and cramps are common p,ace in Parkinson's especially young onset but peripheral neuropathy is a separate condition with an underlying cause. There are usually pain clinics you can be referred too as it can be a difficult pain to treat.

[Hikoi in reply to isis6361]

I have seen other people with PD write about this problem. The relationship of nerve problems with PD seems to be only recently researched.

Here is one article about it. medscape.com/viewarticle/72...

They find 58% of PD patients had peripheral neuropathy but only 9% of people without PD.

Isis what do you think about this article.?

Another, I can't access full article. neurology.org/content/77/22...

[Beckey]

You shouldn't have to wait that long to be seen. Does your insurance limit the doctors you can see?

Here's what the Mayo Clinic says: mayoclinic.org/diseases-con...

[edenpark]

I was diagnosed with PD in 2005 ,in 2012 diagnosed with Peripheral Neuropathy in my left arm and hand,and prescribed Amitriptyline 50mg. then in 2014 'twas diagnosed with it again in both feet ,nothing further prescribed but advised to take Vit D.

[camper1]

I was diagnosed with a

[camper1]

I was diagnosed with b12 deficiency which is what they felt caused the neuropathy. I was started on neurontin which helped at first, when I got horrible pain in my feet I was given Meloxicam, an anti inflammatory med which took away the pain. A primary can order this for you. B12 deficiency is very common with parkinsons so I would see if they have checked this for you.

[Lincpolio]

I have Post Polio Syndrome as does my husband who also has Parkinsons. We have peripheral neuropathy and some years back was advised by a Neuro Physiotherpist that with polio and weaker muscles in our legs they could not work as well to get the waste products in our blood back to our heart and out... She said whenever you can get your feet up. This proved valuable advice and has been passed on and on... Any day that I am at a meeting, or driving all day or flying then I suffer in the evenings and night... Get my feet up every time I sit down, recliner chair.. and 90% less. Hope this helps others as well.

[Lindylanka]

Peripheral neuropathy is a symptom of b12 deficiency which is often left untreated or under streamed due to issues of testing. There are some studies that indicate older people on long term levodopa treatment are more likely to develop folate and b12 deficiencies. If you get tested and your results come out at the low end of the reference range for either you need to have further tests to ascertain whether you have pernicious anaemia. If you do have a deficiency it's vital it is tested, peripheral neuropathy is a neurological sign which means you have more than just a dietary deficiency. Once started on treatment, if you do have PA you will need an injection every so often for life. The time between injection will vary according to what kind of b12 you are given, andvthatvwill depend on where people you are. It should be one of the things your doctor rules out with a diagnosis of PN, but awareness isn't that great. There's a good group, the pernicious anaemia society or PAS on this site, where you can find out more. Good luck finding your answers.

[Donzim]

Expensive but works ...laser. Find a chiropractor who uses them and see if it works for you before you fork over to buy your own. Ours is TQSolo and costs about $2000. Does great stuff.

[Donzim]

Forgot to say that a very resistant friend had neuropathy so bad he could hardly walk and even though he lives in a NY townhouse and is loaded, would not consider it. Finally I nagged him up the point he asked his rehab guy about it and lo and behold, rehab guy had one and it proved successful for our friend. Did he buy his own? No. He's eccentric.

[lempa_nik]

Hi tobykeith,

Mayo Clinic list a large number of sources of peripheral neuropathy at mayoclinic.org/diseases-con.... In particular , it points out the following cause: "Vitamin deficiencies. B vitamins, including B-1, B-6 and B-12, vitamin E and niacin are crucial to nerve health." Do you take Sinemet? The Carbidopa in Sinemet is included because it allows more of the L-dopa to reach the brain, and also because it reduces nausea. It does all this by binding up the vitamin B6 in the body, thereby creating a deficiency. So by creating a severe deficiency of B6, carbidopa might very possibly be causing your nerve problems.

You can then ask "why don't all PD patients on Sinemet suffer from nerve pain after a few years?" I don't know, but can imagine--just a guess-- that perhaps some have a bigger reserve of B6 in their bodies and can stand the effects of the Carbidopa for longer before trouble manifests.

Replacing the Sinement with an L-Dopa source that is without the Carbidopa and trying to restore the presence of B6 in your body might be the answer. But check with a nutritionally well-informed provider first. We are told that excessive doses of B6 can also cause peripheral neuropathy, so you can't just go to the other extreme of taking mega doses of B6!

[libberty21]

Have I got this right if you have vitamin b12 defìćency it is parkinsons related???

[lempa_nik in reply to libberty21]

Hi, Libberty 21,

I think the actual question you meant to ask was " Does Parkinson's predispose one to developing a B12 deficiency?" But I will answer your question as you stated it. No, a B12 deficiency can be caused by several factors. For example, B12 only comes from animal products so vegans are commonly considered at risk of a deficiency. Also, as we get older, we produce less "intrinsic factor" in our stomachs, and the latter is needed to absorb the B12, So older folks are at risk of low B12, even if they eat all the right foods.. The solution for old geezers like me is to take the B12 by patch, or injection, or sublingually.

[Lindylanka]

Just a warning for anyone thinking of supplementing B6. Overuse of this vitamin can cause severe and irreversible damage. There are documented cases both in medical literature and anecdotally of neuropathy with very painful burning sensations among others. This is not to say all such sensations will be caused by the same things. Be very very cautious with B6 and if you feel you have some kind of neuropathy ask your doctor to see you thoroughly tested. Be aware also that testing for deficiency conditions may take several stages, it's not always straightforward.

[Skyrace51]

Hi there , I was diagnosed with C.M.T disease over twenty years ago, and Parkinson's disease about three years ago now , I suffer terribly with pain. I've been through most of the range of pain medication over the years, the best thing I did was to attend the pain clinic. I haven't been able to rid myself of pain yet. But hoping something can give me some relief in the near future. Best wishes for the future 😊

[TheHealingProject]

I too have this issue, and it was diagnosed before I felt anything (in my feet). Mine is not really painful - just present as a 'buzz' off and on especially when I lie down or sit. It seemed to start about a year after my PD diagnosis in October of 2010. I also have a slight numbness at the tip of a couple of toes on my right foot (my dominant and most PD affected side. some toe fungus on both feet which I fight hard with foot soaks, castor oil and whatever else I conjure up. I am gluten free which I think helps. It is more annoying than anything.. but a daily reminder of what is...

[BeezyB in reply to TheHealingProject]

You mentioned your buzz & I described to 2 neurologists but they act like I'm crazy. Do you believe cause of buzz is peripheral neuropathy? Do you get buzz ever in pelvis region before travels down your leg? Mine is when sit or lie & now even stand in place. Like you no pain in buzz but annoying! Want to know why!!

Do you feel "electric" with bad shocks to others when you touch them or turn on light switches it hurts you?!

Driving self & hubby crazy...

[Kmcoy194766666]

My husband has leg pain and the only thing that helps is Gabapatin Or Neurotin he takes 600 mg 2-3 times a day

[tobykeith in reply to Kmcoy194766666]

My primary care physician just gave me Gabapentin yesterday and it seems to be helping already. Thank you for your post.

[camper1]

I take a prescription drug gabapentin for the pain and tingling.