C/l dosage : How long should it take to... - Cure Parkinson's

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C/l dosage

Smittybear7 profile image

How long should it take to determine if you have Parkinson's with gradual increased dosage of c/l? Do your symptoms get worse before they get better? I take 2full pills a day and 1/2 at night. Tremors seem to be worse and more frequent and balance worse. Neurologist said to gradually increase up to 3 pills a day. How long does it take to determine whether you have Parkinson's?

36 Replies

How long have you had these symptoms, how long have you been taking C/L and has the C/L made you feel any better? You've been puzzled by this for several months now. Usually a good (or even a bad) MDS should be able to tell you by now.

You should know within a couple weeks (at most) if the C/L is benefitting you. Is it?

Thanks

Started c/l October 15 and have worked up to 2pills(25-100) and 1/2 pill at night. Neurologist said to work up to 3pills a day. PT thinks I have somewhat improved in mobility. Each day is different so I am not sure what to expect. PT/OT since September could be the reason for improving. Once I started 1 pill and two 1/2 pills tremors increased in frequency and intensity. Today wasn't as bad

Quadriceps cramping when sitting hasn't stopped. Extreme cramping sometimes causes the big toe to raise up. I'm seeing another neurologist in December so I guess I will try to stick with this until then and get another opinion.

If the cramping is at its worst within the first hour after taking a dose, that is a sign of too much levodopa.

Cramping only when I sit. Relief standing or laying down. Multiple MRI s and xrays, no answer. I spend most of the day standing or laying down.

Thanks for your help

Your situation is complicated because you may have more than one thing going on. Quadriceps and foot cramping, only when sitting, is a nerve getting pinched at the lumbar spine. It may also explain weakness of the leg, but not the hand. As you have stated:

"I then had a MRI of the lumbar spine shows osteoarthritis,bone spur L4-L5 pressing on a nerve. ..I spend my days mostly standing or laying down because sitting for any time results in quadriceps cramping and cramping in my big toe and foot."

It is not clear that you have Parkinson's, but it is clear the bone spur is a problem and that it is causing a big part of your problems. I say do what you need to do to fix this known problem, and that will help clarify the rest of your situation.

A yoga therapist helped me relieve a sciatica problem. I can message you with the contact details if you like.

More:

The quadriceps is innervated by the femoral nerve which comes off of L2, L3, and L4. See here:

teachmeanatomy.info/lower-l...

Chiropractic treatment of femoral nerve root pain:

aaronchiro.com/doctor/chiro...

Additional references:

rehabmypatient.com/lumbar-s...

pubmed.ncbi.nlm.nih.gov/124...

Appreciate any and all your help and information. Any thoughts on increased tremors since starting c/l? The neurosurgeon said the bone spur might be causing the cramping but not in the quadriceps. He suggested an epidural for pain but would not solve the problem. The other neuro surgeon wants me to try gabapentin. The pain specialist didn't think either would solve the problem. None of them were suggesting surgery because they could not guarantee that it would solve the problem. I see my chiropractor every weeks. PT/OT can't explain the cramping. The physiatrist thinks it is spacisityand wants me to take baclofen. Baclofen weakens the muscles. Please send me the yoga therapist information..Thanks again for your help.

pwwhite profile image
pwwhite in reply to Smittybear7

Hello there..I get relief doing Egoscue method called Pain Free. Pete Egoscue wrote a book with illustrations if you want to check it out but you would best be served by going to a certified Pain Free clinic or at least affiliate. Good luck to you.

The neurosurgeon said the L4 – L5 bone spur would not affect the quadriceps because this is the location of the sciatic nerve root which affects the posterior part of the thigh. However, you may also have something going on higher up at L2 – L3 – L4, or possibly atypical anatomy. In any case, the fact that your problem occurs only upon sitting is a definitive indication the femoral nerve is being pinched anatomically. It could be the lumbar spine or could be where the femoral nerve passes through the pelvis. Surgery is not necessarily the answer – a better diagnosis is needed in order to figure out treatment.

As regards C/L increasing your tremors my view is very straightforward. C/L is strictly for symptom relief. It does not mitigate underlying disease progression. Its purpose is to make your life better, now. If it makes your life worse you should not take it. Also, it is a distraction from the femoral nerve problem.

Great articles about the femoral artery. I will contact all the professionals I am working with and see what they say.

johntPM profile image
johntPM in reply to park_bear

I take a different view. The key to levodopa doing good is that it gets into the blood, raising its concentration. This requires gastric emptying to occur, plus the workings of the gut. Even after the next pill is taken, to start with the levodopa concentration is going to continue its decline. The lag will vary from person and from time to time. But, if the cramping occurs in the first 30 minutes, or so, after the dose is taken the dystonia is probably due to too little levodopa.

Side to side tap test results for me. The y-axis should be labelled 0 t o 40.
park_bear profile image
park_bear in reply to johntPM

Nice work.

In her case, as I understand, it she is taking IR C/L at most three times a day. The plasma level of IR declines to nothing well before eight hours is up when the next dose would be taken. So if low levels of levodopa were causing her problem it would have occurred prior to the next dose.

In any case the quadriceps cramping upon sitting is not a Parkinson's problem.

Thanks I have sent messages to all my dr asking about the femoral artery and it's roll in quadriceps cramping when sitting. I'm being told that it isn't part of the MRI. It not neurology and I should contact my pcp.

It's the femoral nerve that is being pinched and that very definitely is neurology.

I corrected my question. I initially asked about the femoral artery. My mistake. Response hasn't come back with the results. The nurse responded initially that they recommended a nerve conduction test and epidural and pain medication and asked if I had followed thru with any of those suggestions. I said I want to resolve the problem not mask it. I also asked what nerve appeared on the MRI at L4-L5. Haven't heard back yet

More information on the femoral nerve

" Originating in the lumbar spine, the large femoral nerve runs down through your hip, innervates the majority of your thigh and then passes down the inner edge of your calves before ending at your big toe."

This explains why your toe and quadriceps are both affected.

spineandsports.us/posterior...

"What are the Symptoms of Posterior Femoral Cutaneous Nerve Pain?

The most common symptom of this nerve injury is the inability to sit without pain or discomfort. Most of the time, people with this injury can walk and run pain free."…

The problem is clearly impingement of the femoral nerve. What needs to be diagnosed is where this is occurring. There is a diagram at this link showing places where the femoral nerve can become entrapped:

rehabmypatient.com/lumbar-s...

If you cannot get cooperation from the neurologist with diagnosis, it looks like chiropractors are more interested in this kind of problem.

Regarding the issues the nurse raised with you:

A portion of what becomes the sciatic nerve is what is supposed to issue from L4 L5. An epidural injection there would not be expected to resolve a femoral nerve problem.

The purpose of a nerve conduction study is to assess nerve damage. This is not a case of nerve damage but nerve impingement and that is a different matter.

It is important to make clear to this MD and his staff that you are not a randomly noncompliant patient and you have good reason for declining these proposed interventions.

You have given me lots of information to help me with my next message. Thanks again for your help.

How do you test for impingement?

Your existing symptoms are the best proof of femoral nerve entrapment. The question is where – whether it is at the front of the pelvis or at the lumbar spine L2 L3 L4. Here is an exercise said to relieve entrapment at the front of the pelvis. If this works you have your diagnosis and your solution both:

youtube.com/watch?v=G1wlrYF...

If it does not work that is some evidence the lumbar spine is the source of problem.

I did not find a good way to assess where in the lumbar spine it is might be pinched.

Here is a YouTube search which includes various tests for impingement:

youtube.com/results?search_...

Thanks for your help

I believe this solves the mystery of the misplaced bone spur:

ajnr.org/content/ajnr/31/10...

"LSTVs [lumbosacral transitional vertebra] are congenital spinal anomalies defined as either sacralization of the lowest lumbar segment or lumbarization of the most superior sacral segment of the spine. LSTVs are common in the general population, with a reported prevalence of 4%–30%...classification and numbering of LSTVs are most problematic on MR imaging...present a dilemma for radiologists because they may have to read a lumbar spine MR imaging examination in isolation without the benefit of other imaging such as spine radiographs to help correctly identify and enumerate LSTVs. Correct identification of an LSTV is essential because there are important clinical implications. Inaccurate identification may lead to surgical and procedural errors and poor correlation with clinical symptoms"

So these are common! What this means is your spinal imaging may have been misread due to your lower lumbar vertebra having been mistaken for being part of the sacrum. The result would be the location of the bone spur being incorrectly reported as L4 – L5, whereas in reality it is at L3 – L4, impacting the femoral nerve.

What to do is to ask that the imaging showing the spur be re-read with the foregoing in mind. Also if you can obtain a copies of the images that would the useful as well. If you can not get cooperation have another set of x-rays taken including both your thoracic spine and the bone spur so that vertebrae can be properly counted.

Who should I ask to reread the MRI?Can't open the 1st website. Please resend

Again thanks for your help

The link above is to a PDF. Here is a link to the abstract, maybe that will work better for you:

ajnr.org/content/31/10/1778...

You would ask to have have the imaging reread via whichever medical provider ordered the imaging. If you can communicate via text consider including the quoted passage from my prior comment.

My pcp ordered both the lumbar spine and hip MRI I'll try him first. He often defers my question to other specialist. I will send him a message today. Thanks again for your help.

Link doesn't open

It works for me. You can try instead searching on this phrase:

" Lumbosacral Transitional Vertebrae: Classification, Imaging Findings, and Clinical Relevance"

I will keep track as to when I have the intense tremors. Maybe when I go to 3pills the intensity and frequency will be resolved

Smittybear7 profile image
Smittybear7 in reply to johntPM

Cramping only occurs when sitting and toe raises only if I don't stand up or lay down. At home I just spend the day standing or laying down if cramping occurs. Sitting in the car, restuarant or anywhere else is difficult to deal with. Thanks for your help

Smittybear7 profile image
Smittybear7 in reply to johntPM

Thanks for your help.

I started with 1/2 pill 3x per day for a week. Then 1 then 1.5, then 2. When I got to 2 symptomatic improvements happened. I got 90% of my life back.

Smittybear7 profile image
Smittybear7 in reply to bigl62

Thanks

Smittybear7 profile image
Smittybear7 in reply to bigl62

Did you have any increased tremors while upping the dosage? If so did it improve at 3 pills a day? Thanks for your help

bigl62 profile image
bigl62 in reply to Smittybear7

No changes in tremors until the 2pills 3x per day when they stopped.

Smittybear7 profile image
Smittybear7 in reply to bigl62

Thanks

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