:/ periphial neuropathy

[ramondo4]

Along with my PD. I have periphial neuropathy causing numbness in both lower legs,, this affects my walking any distance considerably, my neurologist has suggested this is not necessarily related to my PD, l would welcome any comments from fellow sufferers. I live in the UK.

[wifeofparky]

are you a diabetic? Peripheral neuropathy is often associated with Diabetes.

[M_rosew]

I also have idiopathic peripheral neuropathy which started a couple of years before my PD diagnosis. Neurologist says a connection between the two conditions is uncertain.

M

[ramondo4 in reply to M_rosew]

I was also diagnosed two years ago with

PD and periphial neuropathy, I would love to get some strength back in my legs, my exercise bike each morning is not doing it for me. Thank you for your comments.

[Bailey_Texas in reply to ramondo4]

Hello ramondo4

The bike helps mainly with endurance and some with strength. Dead lifting will restore you strength and will build your core muscles and along with squats will make every day chores a lot better. You should also do cardio yoga to keep you loose.

[ramondo4]

I am not diabetic, it was one of the first things they

tested me for, I have had treatment for a trapped nerve

in my lower spine. Thank you for your reply.

[Hil101]

I believe that vitamin B12 deficiency can cause peripheral neuropathy and it seems that many people with Parkinson's may have methylation issues (genetic) which stop them from properly assimilating B12. It should be taken under the tongue in the methylcobalamin form, preferably along with a general vitamin B supplement which helps it work. Have a look at b12deficiency.info website if you're interested. Good luck

[ramondo4 in reply to Hil101]

Thank you for that, I have just started taking a B12 tablet each day, I will try anything to

Improve my problem.

[Hil101 in reply to ramondo4]

That's good. You might also want to have a look at Colin Potter's site, fight-parkinsons.org He did loads of research into which supplements etc have been clinically proven to alleviate Parkinson's and he's managed to get rid of all his symptoms and is continuing his research

[Boyce3600 in reply to ramondo4]

Our neuro said not to take B12 because it contains B6 and anything above 3 mg of that is not good..i believe he said it interferes with C/L absorption, but not definite on that.

[silvestrov in reply to Boyce3600]

You can purchase B12 in the form of methylcobalamin without vitamin B6 in the capsule, tablet.....etc. Let's see what the University of Michigan website says about carbodipa/levodopa or levodopa alone and vitamin B6:

"Levodopa is broken down in the body by a process requiring vitamin B6. Breakdown may deplete available vitamin B6. Carbidopa blocks levodopa breakdown and prevents vitamin B6 depletion. People taking levodopa/carbidopa (Sinemet®), or levodopa plus carbidopa (Lodosyn®) have no risk for levodopa-induced vitamin B6 deficiency; it is not a problem for people to supplement vitamin B6 while taking Sinemet."

"For people taking levodopa alone, small amounts of vitamin B6 (5–10 mg per day) may prevent levodopa-induced vitamin B6 deficiency.1 Amounts of vitamin B6 slightly higher than those required to replace depleted levels, may reduce the effectiveness of levodopa therapy and should not be taken."

uofmhealth.org/health-libra...

I realize I am opening a can of worms but the other side of the coin is presented by Dr. Hinz and this is one of the most debated articles on this site:

The Parkinson’s disease death rate: carbidopa and vitamin B6

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

To sum up the above article is carbidopa causes a depletion of B6 thus contributing to L-dopa tachyphylaxis, L-dopa stops working because B6 is required for the conversion of levodopa into dopamine. In addition, the authors site stats linking carbidopa to an increasing PD death rate.

What do both viewpoints have in common? If you are on carbidopa/levodopa, you should be taking vitamin B6. I realize the contradictions are confusing but the bottom line is if you are taking sinemet, you can take B6. If you are taking levodopa alone, only small amounts are required because larger doses with prevent the (estimated) 5 % of levodopa (without carbidopa) which reaches the blood brain barrier. I do not agree with your doctor about not taking B6 with C/L.

Basically, if you want to take B6 while taking carbidopa/levodop,a use the pyridoxyl-5-phosphate form and take it at bedtime. P5P is a precursor to GABA and helps to induce relaxation and sleep:

What is GABA?

"GAD requires vitamin B6 (pyridoxal phosphate) as a cofactor, which can be used to regulate the levels of GABA. Vitamin B6 is a key GABA vitamin."

integrativepsychiatry.net/n...

I hope the helps and this is the most potent form of B12:

swansonvitamins.com/swanson...

No B6 is contained with this vitamin.

[sparkyparky in reply to silvestrov]

I've been struggling with PN for the last year and I am convinced it IS due to Carbidopa causing B6 depletion. I have just had a blood test to check for homocysteine levels- if they are high, then B6 is depleted. Tests are routine in France - not here!! AND since reducing my Sinemet from 3x 125mg daily to 1x 62.5mg daily, my PN has virtually disappeared. I substitute Mucuna Pruriens for Sinemet. When the side effects of the medication are more annoying than the underlying condition and the neurologists are too afraid to help us , what to do? Courage and research - "self help" they've started to call it here in the U.K.!!

[silvestrov in reply to sparkyparky]

I am glad your PN has 'virtually disappeared' and it should be remembered that high methylmalonic acid levels (which are associated with PN) and cobalamin/B12 is also associated with PN. The following study says it all:

Neuropathy in Parkinson’s Disease May Be Related to L-Dopa Exposure

medscape.com/viewarticle/72...

Also, it should be remembered that PN can either treat PN or cause PN:

Treat:

The influence of pyridoxine in diabetic peripheral neuropathy.

ncbi.nlm.nih.gov/pubmed/675...

Cause:

Fenugreek seed extract treats peripheral neuropathy in pyridoxine induced neuropathic mice

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

I have concluded that fenugreek is an excellent herb for PD.

Efficacy and safety of standardized extract of Trigonella foenum-graecum L seeds as an adjuvant to L-Dopa in the management of patients with Parkinson

forum.parkinson.org/topic/1...

[sparkyparky in reply to silvestrov]

Yes, my homocysteine levels are being checked for B6 deficiency also checking B12, red blood cells, white blood cell count, platelets, liver function etc. Whatever is going on, the pain in my feet went once I stopped using Sinemet and substituted it for Mucuna Pruriens. That is good enough for me. Though the science is interesting, and essential for future research, personal observation and experience of what works for each individual has to be respected too

[sylviagreenhalgh]

I had PN as well - they diagnosed with me with ataxia but now they say the reason is normal pressure Hydrocephalus - water on the brain but it is rare and not many people know about it. they took some CSF off via a spinal tap and I could immediately walk and feel my legs and feet. I am now waiting to have a shunt fitted in my brain to drain off the fluid in my brain- it took 5 years for this is to diagnosed. all the best Sylvia

[pen1]

I have had a large numb patch on my outer thigh for years and was told it was unrelated to PD by my neurologist.. Recently I burnt my lower back so badly it was covered in huge blisters but I felt no pain or even discomfort and only realised it had happened when I put my hand on the small of my back and felt an enormous lump which turned out to be one of the blisters. (I had fallen asleep lying on my charging mobile phone - be warned!! ) Might be worth checking every so often whether we're developing any numb areas. It turned out that i had a large numb area on my back - opposite side to the numb leg. I'm not convinced it's unrelated to PD.

[6780]

i have similar problem due to rt calf nerve dying some. i am trying my utmost to remain mobile. i love good posture. pd is making both a challenge. i don't feel (muscle memory) where my body is aligned in optimum position unless i look in mirror or physical therapist aligns me. walking correctly in alignment is so important. i got a rollator which i prefer not to use for daily chores but i am using it for my own physical therapy. goal to align and walk in best possible alignment. i now do twice around track. but still i wish someone could have someone video me in progress so i could perfect posture/gait...when plaing tennis (no longer) i found video helpful for correction. hope this helps. such a challenge.

[ramondo4]

Thank you all so much for your comments and advice on my problems.