I have Parkinson’s and see a movement disorder specialist in Scottsdale. I have had sudden onset of leg and foot stiffness, and associated aching and pain. A leading neurologist believes it might be related to Parkinson’s and not spinal. Anyone have any thoughts on this? I’m not yet on C/L.
Would C/L help this symptom?
Thanks in advance!
Have you exhausted all avenues of investigation for back issues, like MRI? For me, the sudden onset with aching and pain seems more like a back injury, but that’s just based on my experience.
Yes. A leading neurosurgeon said it’s not spinal, etc, but may be a Parkinson’s flare up.
The diagnosis still seems uncertain so we need to put this the other way around: If C/L does help with the symptom then it is Parkinson's.
So, do I try C/L to see?
Not a doctor but in my opinion, yes. A short trial of C/L will not hurt you. I would go with a time release version.
What if C/L does not help? For me not even 1% it has helped ever.
If C/L does not help at all that would be cause to revisit the Parkinson's diagnosis. Do you have typical symptoms like one-sided resting tremor? In my case I can only tolerate very small amounts of C/L, but that is different.
I have typical symptoms. Plus, I had the brand new, cutting-edge biopsies to look for alpha-Synuclein protein. It was present in all three sites, neck, thigh and ankle. It’s 99% accurate. Far more accurate than a DaT Scan, which was also abnormal...
That is pretty definitive. Your case trial C/L will be aimed at deciding if the foot and leg pain is result of the Parkinson's.
One more thing - I have experienced both foot and leg pain from overuse injury as a result of compensating for Parkinson's impairment. So in my case it was indirectly caused by Parkinson's. But the onset was gradual instead of sudden. See my posting here:
Tried that. Every doctor says Parkinson's and prescribes CL even though I have been telling them it doesn't work. Ldopa response is a definitive step in the differential for Parkinson's diagnosis, yet they don't seem to care...... 
What are your symptoms?
Note that some medications can cause tremors.
Forward head, stooped posture, coordination issues, speech issues, heavy sebum, no arm swing, slight shuffle, very slow movement.
No memory or cognitive deficit. 6 years post diagnosis. No response to C/L, Pramiprexole, Parkitidin.
That is just downright confusing. The only thing I can think of would be to see an M.D. at a university medical center to try make sense of the whole picture.
Get an alpha-Synuclien biopsy.
Have you tried digestive enzymes and pantothine for heavy sebum. Seemed to work for my hubby I think. I think it is a digestion problem. But I’m no expert.
Can you tell us more about this? Digestive enzymes and pantothine? Thanks!
Well he is taking a lot of things but pantethine is supposed to help with acne and digestive enzymes help with digestion of foods. He had acne, Roseacea, oily skin and that has gone. Also the PD smell but now he smells normal. I think getting his digestion working better has helped with these.
Other things he took to get rosacea under control was berberine and allimed garlic to sort out bad bacteria etc. and his diet is much better now too. So I guess any of these may have helped too.
And also the hardys DEN he takes has zinc and other Nutrients in it and as Art says below this may have also helped.
Sounds like you are describing me including the non response. B1 vitamin injection helped with my pain and stiffness
Jay,
Zinc is generally low in PWP and zinc can reduce sebum production as well as other things in PWP.
ncbi.nlm.nih.gov/pmc/articl....
Art
I,ve had a gradual increase (over a couple of months) of leg pain from buttocks, upper outside thigh, outside ankle on my affected side. I posted about this before. If i increase my C/L dose by half a tablet it is about 80% better, thus definitely PD related. My guess is that increasing exercise woukd be helpful but with the pandemic (no gym) and the smoke from wildfires making outdoor exercise not possible at least half the time right now, my exercise has been reduced. Im wondering if this kind of stiffness and pain can be helped significantly with exercise, chiropractic, massage or if its more of a medication management issue? I'd like to avoid increasing c/l but as it is right now, i cant really exercise vigorously with the pain and stiffness in the leg.
My whole body ached and it felt like I had severe arthritis through out; then one day I froze and couldn't move. I went to the Dr and he put me on PD medicine I can't remember the name of and I felt like a new man. Over the years my right shoulder pain has returned with the terrible stiffness in my legs to start walking. The best way to know is to go on C/L and see it makes an improvement.
If you are not on C/L go to pdrecovery.org and read Dr. Janice Walton-Hadlock's work to see if you are interested in trying that.
I have both (severe) spinal and (hitherto mild) PD symptoms and the question of what causes what is VERY confusing, as you have found. Getting rid of the stiffness varies by the day, - not necessarily by the medicament! And then by the time of day!!
If sinemet didnt work, does Naproxen? Did anyone advise you to try doubling or trebling the sinemet and seeing if that helps?
if you havent had a back injury ever....and you have pd, this would not be unusual to be part of pd progression. IMO. cheers.
Yes I have same problems C/L will help a lot. After all your body is no longer making dopamine,so where are you to get it?
I have the same thing. I do have some issues in my back but I notice the pain and rigidity is worse when my meds are wearing off.
I hve had PD since 2010 and it has been controlled by meds, then past month i have have same thing, pain in my legs and full of stiffnes after i have been sitting down for 10mins, The other day I walked to our Garden center, back home which is at the top of a small hill then later went back intp our village shopping then home again, about 1/2 mile our maybe just under a mile. Now they say with PD keep moving which i did, but on getting home my legs, feet and body all was in pain. Next time I see my PD nurse I am going to mention it. I see my nurse end October, will keep you informed.
PD makes the small bones in my feet seize up and it causes almost unbearable pain and stiffness in my lower leg/ankle/foot if I don't exercise my feet daily. Took about 3 years to figure that out, confused the heck out of the physio and chiropractor I saw, especially since it wasn't consistent; one day I would be fine, the next I'd be in agony. They're fine now - so long as I do the exercises regularly! Hope this helps
What are cl
Has anyone with PD changed medication, when the initial one was not working? 
Doing better without Carbidopa/Levodopa...??
High Dose Thiamine (HDT)—How critical is the sweet spot?
My journey with Parkinsons and FUS
Rethinking Parkinson’s Disease: could dopamine reduction therapy have clinical utility. (The article)
