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Parkinson's Movement
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Neuropathy

Hi all. This is beginning to be a real pain of late and I wondered what others experiences might be. I can’t even conclude whether it’s PD or some other insidious process running underneath. But it’s getting worse and doesn’t respond to PD meds. I have tingling in fingers and toes and one leg and now my thumb has gone numb. I’m told Gabapentin might help and I’ll speak to my GP, but right now I’d say that this is beginning to become the most annoying symptom that I have. And it seems to be marching on quite aggressively😕. Thanks

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Hi Jeeves. How long has this been going on for? It seems like a circulation problem (maybe?). I have had symptoms start up and then go away after a couple of months.

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Hi Jan. no I don’t think it’s circulatory. It’s common with Diabetics but there are other versions such as idiopathic which means ‘we haven’t got a clue what causes it’! Frustrating and a concern at the moment. Think I might give alcohol up

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Could be a lack of B12?

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Might look into this one but think I’ve had this checked. Thanks for the thought though and I hope you and John are okay😊

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Give up alcohol!!???

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John is really well , started a new drug Safinamide in September had a really positive affect. I had my Vit b12 levels checked as I’ve tingling in my hand feet etc at times , my levels were ok but my doc said try b12 and it certainly has helped . I’ve read that as you age the levels drop and even though you don’t ‘lack ‘ b12 perhaps you need more than average dose . I take Solgar ones tiny and dissolve on your tongue 😀

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👍

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Normal b12 levels might show up in yr labs/blood but if you have the mthfr mutation this can not be a true reflection of yr status. Look into it...can be complicated but really interesting.

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I agree...

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Any advice as to a starting point Sara?

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Try methyl cobalamin, and adenosin cobalamin not the cyano one as if you have a mutation in your methylation genes the cyano one might make things worse.

Also try b6 and b2 as well as the usual thiamine using only the natural forms from plants not the synthetic ones. But be careful not to overdo the b6 too long as it can also cause the symptom if excessive. I think they say 50mg per day should be ok but a few bloggers say that was too much for them.

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My husband is the PWP and he is on 100 mg of B6 at present. I have also read this is the max dose for most people, although it may not be enough if you have pyroluria. Agree on the cyano B12 as I was taking 1000 mg a day (this is a while back) and I started to get a very weird symptom of leg trembling. Stopped the B12 and the trembling went away.

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Are you taking a high dose of B1?

Also for the past 2 months I’ve been taking PEA which was recommended by the pharmacist when I was discussing taking a daily anti inflammatory. It has helped hugely with muscle stiffness at night and I’m now turning over with ease. However, one of it’s claims is to help neuropathy so it might be worth a try. You need to give it 3 months apparently.

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There is an old post about PEA

healthunlocked.com/parkinso...

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I didn’t see anything about PEA in the post? Did I miss it or wrong link?

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Nor did I!

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Me neither!

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Astra, what is PEA?

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Palmitoylethanolamide

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Good morning Astra, what brand you take?

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It’s just made by my local pharmacy in Perth. There seem to be brands available on the internet.

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Hey Astra. Thanks. I have an ambivalence to anti-inflams. I realise their role but always thought that they damaged intestine even more if taken frequently ?

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This is a bit different. It is a fatty acid and described as a medical food. It’s not harsh on the stomach like voltarin etc.

As a side note my sister works at a pain clinic and apparently this is the new big thing for helping with chronic pain for their patients, most of which they apparently can’t do much for.

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do you have any links to read about it from your sister? what brand and dose did the pharmacist suggest so as to research? thx

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I’ll ask her if she has any info. The pharmacist gave me a sheet of paper but I no longer have it, so I’ll get another one and try and scan it in.

I’m taking 600mg morning and night. The improvement in stiffness is significant, but I was hoping it might be a cure and I can’t say it is so far. I still need my meds🙁

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ok thanks, if you tell us the name brand we can also look it up too.

its good to hear something can help!

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A friend of mine with PD is responding well to Gabapentin. I agree to check B-12; both high and low levels can cause numbing and tingling. I have cubital tunnel syndrome; the nerve on the inside of my elbow gets compressed when bent, and my fingers and hand tingle; sometimes I wake up with them numb. I also just read on Livestrong that taking a high dose of one B vitamin, such as B1, can cause an imbalance in the other B vitamins and in severe cases, the imbalance can cause deficiencies in the other B vitamins. A few things to think about. Neuropathy is no fun, but unfortunately also does occur with Parkinson's. My father suffered terribly for years with both.

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A thoughtful and useful response. Appreciated.

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I have been taking 2 100mg capsules of Gabapentin each day for a number of years, to relieve the pain caused by chronic Arthritis - long before I was diagnosed with PD. It is interesting to read that Gabapentin is now being prescribed FOR PD. Perhaps I am getting double benefits!

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B6?

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Whenever I take one 300mg Gabapentin it triggers of a Migraine attack and a feeling of Nauseous.

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Hi guys, I have had a feeling in the bottom of my feet for about six months . It feels like my socks are bunched up even when barefoot, I also have a slight "tingling" in my leg when walking. At my last appointment I was sent to the Neuropathy dept. where they spent an hour doing tests on my feet and legs, but could not find any course. So it looks like it may be a "new" symptom of PD or not.

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Sounds really uncomfortable.

PD - the gift that keeps on giving!!

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Sounds similar to my husband (PWP) - he describes it as like walking on marbles! As I just mentioned in my reply to jeeves19 below, hubby is going to the hospital for an SI nerve conduction test in two weeks' time......hope they find the cause of his pain as we really need to get to the bottom of it.

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Should read "cause" not "course"

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Have you had a brain MRI ? I did and it was a tumor

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Yes I have had MRI, that was when their found my PD 18 months ago.

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jeeves,

The common neuropathy supplements are acetyl l carnitine in conjunction with alpha lipoic acid and you can read plenty online about this combination. Another is the vitamin B combination mentioned above which may also lower high homocysteine level.

Just wondering if you are taking a statin drug for cholesterol as these, among other issues, may cause neuropathy.

Art

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Thanks Art

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Hi Art

I'm piggy backing your reply to Jeeves, I am taking Simvastatin for cholesterol, so will bring it up at next appt. in March. Cheers

John

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Johnboy46,

Here are a couple of links you can take with you for the discussion :

ncbi.nlm.nih.gov/pmc/articl...

scientificamerican.com/arti...

apps.who.int/medicinedocs/e...

ncbi.nlm.nih.gov/pmc/articl...

Art

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I have that problem too, jeeves19. Haven't heard from you for a while, and I was wondering how you have been doing. My hands and feet started to have pins & needles sensations, about 8 years ago, and it has gradually gotten a little worse, until just this last year. Now I have some numbness in both hands, feet and face, and the tingling, and arms "going to sleep at night" sometimes, keeps me up at night, at times. Just this last week, my neurologist had me take a blood test, where a number of things will be checked, and then we will go from there. He has not said that he thinks it's from me having PD orAtaxia. It would be great if we could get some relief from this aggravation, wouldn't it. Some of the advice in the comments, look good. Please let us know if you get any answers, and wishing you the best Jeeves 19. Hang in there, man! We're in this, together!

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I’ll write privately DD

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My PD husband also has type 2 diabetes, and diabetic neuropathy - gabapentin (600 3x/day) has worked well for him for 10+ years. I've heard that PD can certainly play havoc with nerves, and PD meds generally don't help - the recommendation was to get the source of the pain id'd and treat that specifically (e.g. gabapentin)

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I found this really interesting. I got my PD diagnosis about four years ago, but In 2001 had come down with Lyme disease. Not long after that, I was suffering from a terrible peripheral neuropathy, which I always assumed was related to the Lyme. I have been wondering of late whether it was just an early sign of the Parkinson’s. In any case, my Lyme doctor prescribed gabapentin, three 300mg capsules every night at bedtime. That has fixed the problem, but on rare occasions (like about a month ago, for the first time in a long time) I will be out of the gabapentin, and I am rudely reminded of the existence of the neuropathy by being unable to sleep.

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Gabapentin sounds useful but I’ve heard bad things about it’s toxicity in the long run sadly😕

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What bad things have you heard jeeves about long-term use of Gabapentin? My husband (PWP) started taking it a couple of months ago for nerve pain which may be coming from a bulging disc in his back or maybe neuropathy. He's going for an SI nerve conduction test in two weeks' time.

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Usual stuff. Toxic for brain over time. Probably the same for every drug but regular use is bad. I mean daily NSAIDs probably not great for brain eh?

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Yes, that's true - Hobson's Choice, caught between the Devil and the deep blue.....and all that :)

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I also have what I term 'internal tremor' especially in my left arm which, when I wake up at night, has a tendency to be irritating enough to keep me from falling back asleep. I have been using a new magnesium 'butter' recommended by my acupuncturist. When I woke up at 4.00 this morning, I rubbed all over both arms and miraculously slept until 6.00. Not sure what else is in it, but have been using during the day for aches and pains, PD-related, I always have in my shoulders and neck.

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I wonder whether you may be able to find out what's in the magnesium 'butter'? I would think it may be like easilly's home-made magnesium oil mixed with some kind of body lotion to help it sink into the skin as he's mentioned previously?

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Right on the container: Extra virgin coconut oil, whole plant hemp extract, unrefined shea butter, beeswax, magnesium chloride, proprietary essential oil blend of frankincense, myrrh, lavender, arnica, German chamomile, helichrysum. I did look up the essential oils, and many are cited for inflammation.

It's called Good Life Mg Butter. Amazon does not sell it. I just looked it up on their site, and it's $115 for 1.5 oz. The acupuncturist charged me $75.

By contrast, the Life-Flo Magnesium Lotion is $9.95 for 8 oz. Ingredients are purified water, magnesium oil (magnesium chloride brine), cocos nucifera (coconut oil), caprylic/capric triglyceride, glycerine, butyrospermum parkii (shea butter), glyceryl stearate, catearyl glucoside, natural vanilla oil, hydroxypropylmethyl cellulose, potassium sorbate, citric acid, and xanthan gum (cannot vouch for all the spellings)

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jeeves19

Have you tried high dose thiamine hcl? They are having success with it, myself included. Check out Facebook group Parkinson's thiamine hcl. It is a closed group. Just ask to join. A lot of information and help available. A great informative group to join. Good luck

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