Turns out I do have peripheral neuropathy... - Cure Parkinson's

Cure Parkinson's

25,483 members26,803 posts

Turns out I do have peripheral neuropathy, no doubt as a result of my long-term use of carbidopa/ levodopa

gleeson profile image
16 Replies

I mentioned in an earlier post that I suspected peripheral neuropathy might be contributing to my problems with gait and balance. My neurologist confirmed that tests showed I have PN and, as is often the case, a vitamin B-12 deficiency.

For full report see parkinsonsand5htp.blogspot.....

I apologize for not reporting more fully here rather than use the hyperlink but at age 87, I don't have the energy to rewrite the piece.

Written by
gleeson profile image
gleeson
To view profiles and participate in discussions please or .
Read more about...
16 Replies
gleeson profile image
gleeson

For some reason, that link doesn't seem to work. Try this one:

bit.ly/2dqEa7p

in reply to gleeson

OK

wifeofparky profile image
wifeofparky

If you are going to start taking B-12, take B complex instead. You get better results with the complex over taking single B vitamins. There is a synergy that makes them more effective that way. His podiatrist advised him to take a high quality brand. If you have access to it, Shaklee brand is very reputable. My husband knew the difference when he missed a dose. Good luck.

Chicafromchitown profile image
Chicafromchitown in reply to wifeofparky

What is your husband taken the B complex for? I have a B12 deficiency, lately I've been having lots of freezing episodes. Did your husband had any?

wifeofparky profile image
wifeofparky in reply to Chicafromchitown

he took b complex for his neuropathy. He did not have diabetes however- just PD

wifeofparky profile image
wifeofparky in reply to wifeofparky

he luckily did not have freezing episodes. Just fatigue and daytime sleepiness.

TheresaCurley profile image
TheresaCurley

I've had diabetic neuropathy for awhile. It bothers me most at night, my feet burn. I also need to take B12 shots. I wonder if it is tied into the Parkinson?

Hikoi profile image
Hikoi in reply to TheresaCurley

Diabetic patients who took these medications had a 28% lower chance of developing Parkinson's

time.com/3967611/diabetes-p...

TheresaCurley profile image
TheresaCurley in reply to Hikoi

I looked up these drugs. Rosiglitazone or pioglitazone are Advantia and Actos neither of which I have ever taken. I was however on Victoza (liraglutide) which is showing neuroprotective properties in trials. I took it for over a year but my insurance company gave me a hard time about the cost and I was switched to Trulicity (Dulaglutide).

Hikoi profile image
Hikoi in reply to TheresaCurley

The latest news on repositioning drugs which includes trials on diabetic drugs. FYI Theresa

cureparkinsons.org.uk/news/...

TheresaCurley profile image
TheresaCurley in reply to Hikoi

Thanks for the link.

gleeson profile image
gleeson

As I mentioned in my blog post, recent studies suggest that over half of the people with Parkinson's who have been taking carbidopa levodopa for a long time end up with peripheral neuritis. But apparently your neuropathy has been attributed to your diabetes. Still it might be something to discuss with your doctors.

TheresaCurley profile image
TheresaCurley in reply to gleeson

No, I had diabetic neuropathy way before I started on carbidopa levodopa.

Schubez profile image
Schubez

@ Gleason

Sounds like what my hubby may have too. His balance is worse and dyskinesia now on at least once a day. May add B12 to his supplements. I search lots for helps. Don't see the neuro often...he is over a mountain 100 miles round trip. Appreciate health unlocked, we have no support group, being a small town.

silvestrov profile image
silvestrov

Alpha Lipoic Acid for Symptomatic Peripheral Neuropathy in Patients with Diabetes: A Meta-Analysis of Randomized Controlled Trials

"When given intravenously at a dosage of 600 mg/day over a period of 3 weeks, alpha lipoic acid leads to a significant and clinically relevant reduction in neuropathic pain (grade of recommendation A). It is unclear if the significant improvements seen after 3–5 weeks of oral administration at a dosage of >600 mg/day are clinically relevant."

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

Acetyl-L-Carnitine in the Treatment of Peripheral Neuropathic Pain: A Systematic Review and Meta-Analysis of Randomized Controlled Trials

"The current evidence suggests that ALC has a moderate effect in reducing pain measured on VAS in PNP patients with acceptable safety. Larger trials with longer follow-up, however, are warranted to establish the effects."

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

Combined R-alpha-lipoic acid and acetyl-L-carnitine exerts efficient preventative effects in a cellular model of Parkinson's disease.

"... we found that when combined, LA and ALC worked at 100-1000-fold lower concentrations than they did individually. We also found that pretreatment with combined LA and ALC increased mitochondrial biogenesis and decreased production of reactive oxygen species through the up-regulation of the peroxisome proliferator-activated receptor-gamma coactivator 1alpha as a possible underlying mechanism. This study provides important evidence that combining mitochondrial antioxidant/nutrients at optimal doses might be an effective and safe prevention strategy for PD."

ncbi.nlm.nih.gov/pubmed/204...

Alpha lipoic acid & acetyl l carnitine:

vitacost.com/vitacost-alpha...

Supplement Facts

Serving Size: 2 Capsules

Servings per Container: 120

Amount Per Serving% Daily Value

Acetyl L-Carnitine (HCl)1000 mg*

Alpha-Lipoic Acid600 mg*

*Daily value not established.

Other Ingredients: Gelatin (capsule), magnesium stearate (vegetable source), silicon dioxide, dicalcium phosphate and croscarmellose sodium.

Warnings

Pregnant or lactating women, diabetics, hypoglycemics, and people with known medical conditions and/or taking drugs, should consult with a licensed physician and/or pharmacist prior to taking dietary supplements. Keep out of reach of children.

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

The warnings exist for diabetics because these two supplements affect blood sugar levels - meaning they lower blood sugar levels (alpha lipoic acid):

"Several studies suggest alpha-lipoic acid helps lower blood sugar levels. Its ability to kill free radicals may help people with diabetic peripheral neuropathy, who have pain, burning, itching, tingling, and numbness in arms and legs from nerve damage. Researchers believe Alpha-lipoic acid helps improve insulin sensitivity."

umm.edu/health/medical/altm...

Carnitine in Type 2 Diabetes:

"In conclusion, both l-carnitine and ALC are effective in improving insulin-mediated glucose disposal either in healthy subjects or in type 2 diabetic patients."

onlinelibrary.wiley.com/doi...

++++++++++++++++++++++++++++++++++++++++++++++++++++++

ALA & ALC should be taken on an empty stomach between meals but not after dinner.

Tiger101 profile image
Tiger101

These posts are interesting. For the past two years my husband has been suffering with what they called Small Fiber Peripheral Neuropathy. He has at some on and off times in the last two years with borderline diabetes but not diabetes. He was tested about 6 months ago with a skin biopsy and it came back negative for Small Fiber Neuropathy so they said ok you don't have that. meantime, his feet always hurt and burn especially at night. So sensitive cannot even wear shoes. He had these symptoms way before starting Rytary 3 months ago. It is so frustrating. He has tried gabapentin, lyrica, amitriptyline, tramadol etc. Now the only thing he is on is advil or Tylenol and the Rytary.

You may also like...