is this peripheral neuropathy?

[rebtar]

I get numb feet (not totally numb but partially numb) when meds are low but it goes away when i’m “ON”.

I asked my MDS if this is peripheral neuropathy, she said no, it’s a non motor symptom of PD.

I assumed it was PN, but I don’t understand why it fluctuates with the meds…

Anyone have an explanation?

[MarionP]

Describing better detail what your symptoms are. For instance, "numb feet" could mean can't feel touch, or it could mean I can feel touched but not cold, or it could mean I can feel cold but if you stick my toe with a needle I can't feel that" etc. also, do you mean that your feet are numb in their arches, or their heels, or the balls of your feet, or your toes, and what does that numbness "feel like"? And what does it "look like"? And when (what time of day) does it happen versus when does it not happen, or "when" meaning associated to the dime I take this med or the time I take that med". That is, if you want a serious answer.

Then also you will need to specify or List what medical conditions you have in addition to Parkinson's... And what stage of Parkinson's you are in... And what if any medication treatments you were taking for all of them. Again, if you want any hope of a correct or in the ballpark answer.

[rebtar in reply to MarionP]

Thanks, will do.

[Ashti]

Interesting, because numbness in his toes is my husbands only neuropathy symptom.

He says the numbness feels like his toes are stuffed with cotton balls. And he assesses ‘how is it today’ by seeing how it feels when he moves his toes - some days it is more pronounced than others, but does not go away completely.

We have not done the comparison between when C/L is at its peak and when it is waning so see how meds affects it - but if so it has not been obvious like in your case. I will inquire about that to see if there is a subtle correlation. Also have not run through MarionP’s list of type of numbness (though from memory of his descriptions he notices when toes are cold. Now I am curious about if a needle would induce pain and if he would let me test for that.)

The neurologist called it neuropathy on PD diagnosis day. It has not been progressing and am glad there is not pain involved, but it is bothersome. What helps is a daily foot massage, and that does not take away the cotton ball feeling but it does lessen it slightly, and the additional foot mobility that a daily massages has brought is appreciated.

We would like to know more about what caused this and how to avoid progression, but so far the doctors we have spoken to do not know. They will schedule some sort of nerve test, but the family doctor did not expect that to shed too much light.

(Med is Sinemet, takes vitamin supplements including B vitamins in case it was related to low B12, PD diagnosed in 2022 after pneumonia and then Covid brought on obvious PD symptoms earlier that year (though in retrospect subtle symptoms existed a few years before ( ie) smaller hand-writing sometimes, feeling more tired than usual after long runs. )).

This is my long winded way of saying ‘Following’ and I hope you get to the bottom of it.

[Esperanto]

Hi rebtar. Your previous comment from some time ago, "I get plenty of B12 and I get B6, not sure if enough but I do supplement," combined with neuropathy-like symptoms, may warrant a check of these levels. Not necessarily due to a deficiency, but there could be a risk of neuropathy symptoms due to overdosing.

However, neuropathy symptoms in PD do not always indicate a vitamin B issue or a relationship with high C/L (carbidopa/levodopa) intake, as shown in the research below. Additionally, this research indicates that carbidopa/levodopa medication is not necessarily linked to neuropathy, which occurs in 40% of PD patients. However, there is a relationship between the severity of neuropathy symptoms and the correct C/L intake:

“the effect of peripheral neuropathy may be most evident when Parkinson’s disease subjects are not in their best health status and during their best motor performance (in their OFF states), because the lack of dopaminergic compensation typically exacerbates motor impairments in Parkinson’s disease. For this reason, it is particularly relevant to ensure an optimal dopaminergic treatment for this specific PD-PNP subgroup.”

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

Please provide us with more information about your situation, as MarionP previously asked.

[MarionP]

Because there are many things it could be going by just the symptoms you mentioned... Would take a bit more information to narrow it down.

Also what do you mean by MDS, you mean your doctor?

[rebtar in reply to MarionP]

Movement disorders specialist.

[rebtar]

Thanks to all for your replies. Answering all questions:

I'm in my 10th year with PD symptoms. 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. 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 varies from slight to more intense tingling, mostly in my toes, and numbness on the front part of the soles 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 pronounce 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, but I'll have to get back to it.

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.

5. Spinal stenosis?

Rebecca