Repost with more info: peripheral neuropathy

[Rebtar]

Thanks to Marion and Esperanto for helping me to provide more information. All questions answered here...

(Original post question: my Movement Disorders Specialist (MDS) says foot numbness is not Pripheral Neuropathy, but rather a non motor symptom of Parkinson's??? )

I'm in my 10th year with PD symptoms. Diagnosed 2015. UPDRS (I just used the online tool) is 31/100. H&Y is 2.5. My motor symptoms are still mild, but I'm starting to have more autonomic symptoms: occasional choking, urinary urgency, urinary retention, constipation drooling mostly at night. And (ugh) cognitive symptoms too). PD symptoms started on the left side and have progressed to mild symptoms on the right.

In addition to PD I have a history of depression and anxiety. I also had episodes of sciatic pain, which was diagnosed via MRI as spinal stenosis and some disk bulge, both at one level only.. I've controlled well with core strengthening exercises. I think straining when constipated contributed to this more on this later.

The sensation in my feet varies from slight to more intense tingling, mostly in my toes, and numbness mostly on the balls of my feet when I walk for a while. Occasional numbness on the top of my left foot. can also feel cold.

It's more noticeable in the afternoon and evening, and follows the curve of response to carbidopa-levodopa throughout the day. Best in the morning, worse mid afternoon, and late evening. It's more pronounced on my left side, as are my motor symptoms.

When I'm ON, I don't notice it. When I strain to have a bowel movement, this exacerbates the tingling and numbness briefly, and has caused an occasional shooting pain in a foot. When the numbness started several years ago, it improved with intense exercise. I've been exercising less (especially the intense exercise) for several reasons, working on that.

I can feel touch on both feet, but the sensation is less on the left side. I just tried stabbing my toes with a pin. I feel pain on both sides, but less on the left side.

No visible change in feet.

Other meds. I checked which can contribute to peripheral neuropathy , and I am taking one -- Gabapentin ( which is also used to reduce neuropathic pain?). 900mg supposedly to help with sleep, doesn't help much now and is on my list of meds to reduce/eliminate.

On my most recent blood tests, b6 is elevated. B12 is also high, because I forgot not to take it that morning. Homocysteine is also elevated (12) in comparison to last test (9.1) from a couple of years ago.

VITAMIN B6, PLASMA 25.1 H range: 2.1-21.7 ng/mL .

VITAMIN B12 >2000 H range: 200-1100 pg/mL

I took Pure Encapsulations B Complex Plus one cap am and pm, from 2015 when I started to work with a functional medicine doc, until perhaps a year ago when I realized that the form of Vitamin 6 could be damaging. Since I've supplemented with products with the Pyridoxal 5-Phosphate form, but not daily. Probably three times per week. Still high dose.

I remember Park Bear saying that low Riboflavin could contribute to problems with high B6. I have not had that tested.

I think that's complete. After looking at all this, I find five variables that could contribute:

1. B6, and other B vitamins. How do I find out what is deficient, what may be overdose?

2. Need to get back to more intense exercise.

3. Gabapentin?

4. PD meds aren't optimized. Need to work on this with my neurologist. I tried Rytary end of last year, found it difficult to manage. May still be an option.

5. Spinal stenosis?

Thanks again to those who responded to my first post.

Rebecca

[park_bear]

Vitamin B2 - riboflavin, deficiency is commonplace in Parkinson's patients and can cause vitamin B6 toxicity even in the absence of B6 supplementation. Whenever there is a concern about potential B6 toxicity, testing B2 is the top priority among vitamin tests, even more important than testing B6. Further detail about riboflavin here: healthunlocked.com/cure-par...

About B6 testing here: healthunlocked.com/cure-par...

Constipation remedies here: healthunlocked.com/cure-par...

[MarionP]

Do you have any problems with blood pressure, heart disease, or diabetes? On any blood pressure meds? Do you ever suffer from either low blood pressure or high blood pressure or any kind of compromised cardiovascular issues of any kind? Have you had any similar issues in your hands as of the symptoms in your feet? Yes it could be parkinson's spasms. It also could be something called Raynaud's Syndrome, if you have any peripheral vascular problems such as arterio sclerosis or atherosclerosis, or hypertension, and associated syndrome can be Raynaud's... And the third cause could certainly be diabetes.

Alternatively, you may have blood pressure related loss of full blood circulation in your extremities were the arteries and veins are smallest. In those arteries and veins and increase of blood pressure my actually make it hard for blood to get all the way into the smallest arteries because the blood is rushing by the successively narrower passages.

If you have a form of diabetes, or smoked, and a lifestyle or family history of narrowing and/arteries, or if you have finally structured fingers and toes, that could be sufficient. Or if you have Raynaud's, Raynaud's is a pathological disorder of the muscles controlling your blood flow and your toes and or fingers, we're in when your toes experience a quick bit of cold or not enough blood suffusion, some feedback mechanism tells your muscles controlling your blood vessels that you are undergoing a cold snap and need to restrict your blood flow to the more vital organs so the blood vessels spasm down and constrict. The problem is that those same nerves have a reverse signal job to reverse the constriction and in Reynolds this function is flawed, the nerves fail to relax and reopen the blood vessels, which leads to sensation of cold and numbness, as your toes are starved of blood and the warmth of the blood brings, being engaged in exercise like walking can keep some of your blood flow going so you don't know this while you were physically active because the action of your weight and muscles can keep the vessels perfused by the mechanical action of walking etc.

For better explanation I think I would just Google search "Raynaud's Syndrome."

It's good to look into this in case you have it, because whether it's a chronic narrowing disease or the reflexive problem with reynauds, you can lose your toes, not very much unlike having diabetes.

I long ago forgot which blood pressure medications can have an effect. they work by reducing your blood pressure in those arteries, or maybe getting those arteries to relax a bit. I do remember that the blood pressure medication that sometimes helps is also something that you take for excess sweating, maybe Hytrin (Terazosin), and one other similar BP med which is a relative of terazosin. Hytrin may be more effective, but it also has a known side effect of occasional postural hypertension so you have to be careful about standing up abruptly. And there are strategies about avoiding abrupt cold by various means you can read about.

I am not a physician so you should be talking to a doctor about these possibilities and how to evaluate and then follow up.

[Rebtar in reply to MarionP]

Thank you Marion...much appreciated.

Blood pressure has always tended to be on the low side. So no blood pressure meds. Occasional dizziness from low blood pressure. Heart calcium score zero. No known heart issues.

Reynaud's: very occasionally I get a sharp prick on a finger, but it's pretty much the feet. There are no "episodes", rather, it follows the arc of ON time/ PD meds. Also tends to be worse at the end of the day.

No diabetes. Although I'm genetically susceptible. A1c was good last time checked.

Never smoked, big hands and feet.

So back to my list above...

[Moonwalker1967]

Can you please let me know which tool you used to diagnose, please! I have same symptoms plus years of RLS but according to neurologist Dr Oliver Bandmann at Sheffield hospital, I am lucky as it is not Parkinson's. He had not done any form of examination btw. I had to wait for 6 months to see him

[Moonwalker1967]

Raynaud's Syndrome is what my mother and I have and yes, it causes numb toes and hands. I work from home for 40 hours a week and get super cold sitting down all day plus the numbness. I am better as soon as I walk and exercise 😀