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Started having action tremors in 2019 on my right side. After 2 1/2 years and two neurologists I was diagnosed in 2021 at the age of 44 with Parkinson’s. They tried me on meds and did not respond to them. Went without meds for three years and then started to have issues with walking so I was referred to a movement disorder neurologist. Put me on carbidopa levodopa 100–25, and as I slowly titrated up, I started having side effects such as abdominal contractions and my right leg started to seize, which made walking worse. Then tried me on rasagaline for two months, which I did not respond to. Then put me on amantadine and benserazide which also caused me the abdominal contractions and my right leg seizing. Went back to the neurologist and switched me back to carbidopa along with amantadine twice a day and as soon as my dosage of carbidopa titrates up from the half pill three times a day to 2 half pills and one full pill daily I start to get the same side effects of contractions/ punching in the gut and my leg seizing 30 to 45 minutes after my dosage and lasts uuntil my next dosage. I have tried to push through it for a month and a half and it is not going away. Anyone else Experience this? I am so miserable medications are making my symptoms worse and I am so confused on how to proceed. I have been trying to get answers for five years.I have not done testing just physical evaluations, and my neurologist told me he is not comfortable giving me a Parkinson’s diagnosis until I respond to the medication‘s.
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Diesel4
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the doctor diagnosed me after a 15 minute visit. He said it was based on the rigidity in my body and not the tremor. At the time of my diagnosis I was two weeks post surgery from having my breast implants removed so I was a little stiff and had to limit my movementslol
The diagnosis of PD can be challenging, especially in the early stages, and misdiagnoses do occur. There are studies indicating that up to a quarter or even 30% of patients with PD are initially given a different diagnosis. This is partly because there is no definitive diagnostic test for PD, and the symptoms can overlap with those of other conditions. Therefore, the diagnosis is a clinical process, based on medical history, symptoms, and the response to medication. Wishing you strength in your journey to find the right answers and treatment. Stay hopeful! 🍀
I am now aged 68 and been tested twice, 2016 [where I had long term effects to an epilepsy medication Epilim, severe shaking] and 2021 for PD, both negative, I had an operation for a schwannoma(benign tumour) on left elbow, 2012, and serious side effect of AZ vaccines in 2021 both in left arm, after muscle loss and regain now have 'essential tremors in left hand/arm', my father had PD so there is a likelihood that I could inherit the condition, I have a weakness in my right leg, making walking hard at present, but yet again I had an operation to remove a schwannoma on the right hand side of my spinal cord in 1997, so there is hope yet as I have just moved house, I was told after a medical check-up yesterday "You have low blood pressure!" after taking Lisinopril for high blood pressure for twenty years, so maybe🤞
My father was also diagnosed with Parkinson's in his early 50's hence why the neurologist wants to do genetic testing. His symptoms were very mild and progressed very slowly. I am actually starting to question his diagnosis. His grandfather also had "the shakes" after his return from WW1. I know trauma and stress probably attributed to this. The body is a mystery which we are all trying to figure out and hopeful we will get there one day.
At the moment trying to live on my own, left hand 'fluttering' in the 'breeze', whilst on a laptop🙄 I wish they would solve my mystery, do I have PD?, technology certainly does not help with my "trauma and stress"😖
You know if you have not had a proper medical history and full workup anytime recently or it much in the past then really what you have had is a bit of a "bait and switch" set of diagnoses based on starting off with mostly blinders, which is upside down as far as proper medical diagnosis procedure is concerned. You're just going by symptoms with probably a predisposition to quickly characterize them as parkinsonism and then with that context in mind widen the diagnostic possibilities only enough to fit into the tremor and "Parkinsonism" type classification system. But in terms of Total medical and physical status, that is starting upside down with maximum blinders and then trying to figure out what is inside where your flashlight is pointing while everywhere else is dark, the problem is you can only see what the flashlight lets you see while everywhere else to look is excluded, rather than starting off with your entire person with no blinders and full light of day everywhere including where your little flashlight might be looking. So this can't rule out the possibility of other things going on which would perhaps explain why your medications aren't showing results. Can't know without you providing that fuller diagnostic history and having had some kind of medical work up that is a little more complete. Until then what you have is a mystery, it is kind of like trying to estimate how tall you are by only photographing the top of your head.
There are a lot of diseases with side effects that are similar to or mimic those of Parkinson's, but are not PD. So you may need a team including your neurologist, an internist, and endocrinologist to go through your entire medical history and do careful differential diagnosis including full battery of medical tests (CBC, unless the full packages specified tends to leave out a lot of areas) including a DNA assay to see if you have any of the unusual or rare genetic variants as well as identify any mutations that could appear as symptoms or influence the way you process chemicals and medications.
Thank you. This is exactly how I feel and it logically doesn’t make sense to me. A mechanic runs a diagnostic test when you bring your car in… They seem to just push medication and when I ask about tests they keep telling me that they first start by trying medication and seeing how I respond. It’s been nine months and I just wasn’t sure if most folks experience relief rather quickly with these medication’s or if it takes a few months. I have been told they are going to do gene testing and I have also been referred to a neuro psychiatrist as the movement disorder specialist stated that my action tremor is a learned pattern. Thank you for your suggestions on gathering a team. I will advocate for this next appointment.
That's what I'm afraid of, sticking medication in me for PD then IF I 'improve' it MUST be the medication that is doing for me, therefore you MUST have Parkinson's Disease, I am taking plenty of medication for plenty of other medical conditions, a couple are neurological conditions, epilepsy and Schwannomatosis [Neurofibromatosis type three] What in a few months they find another completely unrelated factor🕵️♀️that COULD be causing my Parkinson's Disease symptoms😲🙄
My experience: I had right side issues with my foot/toes cramping and a frozen shoulder. After resolving the frozen shoulder I still had tremors in my right hand. My family doctor referred me to a neurologist and she determined PD. That neurologist was retiring so I went to another one that confirmed PD and put me on C/L. No lie, within one hour of taking my first pill I felt a huge difference in the “internal shaking” that I never realized affected me that much! My arm/hand mobility have gotten better but I still have a tremor occasionally in my right hand and my right toes still curl/cramp, maybe both just not as bad.
i also got it at 44 with tremors and don’t respond well to meds. After about a month on a ketogenic diet with propranolol 1-3 times a day i had relief.
Interesting. I have been keto the last few years already however prior to meds I did Carnivore for 4 months and there was a significant improvement in tremors and walking. Maybe worth exploring again.
I sometimes get severe cramping down right has side of body from head to toe , usually when I’m either sick or if I have strayed from a clean diet, especially if I start on sugary stuff
Sorry to hear about the cramping. Any time I stray from my usual diet my body makes sure to tell me as well however it is usually severe body aches or headaches.
Sorry to hear about your problems. From your weird response to Parkinson's medications, I would seriously doubt your diagnosis. But hey, I 'm no doctor.My neurologist confirmed my Parkinson's with a C-DAT scan. Have you had any tests like that?
Other people have mentioned it, it's when you respond to the levodopa that they then treat you for parkinsons.I mention being treated for parkinsons as no one can say 100% you have it, although a DAT scan gives a 80% chance you have it.
DaTscan, or dopamine transporter scan, is a brain scan that uses a radioactive tracer to visualize the dopamine system in the brain, helping doctors diagnose and differentiate between conditions like Parkinson's disease and essential tremor.
Neurologists and MD doctors prescribe pills on a trial basis, which takes a lot of time, as they really don't know what else to do.
You will gain a lot of information on this site, hopefully going toward helping you.
I take my levodopa 30 minutes before/after a protein meal. This was taken from a great blog we've written:
"If you're taking levodopa, it's important to time your protein intake wisely. This is because levodopa and dietary protein compete for absorption in the gut and transport across the blood-brain barrier, potentially reducing the effectiveness of your medication.
Levodopa is absorbed in the small intestine using the same transport system as large neutral amino acids (LNAAs) found in protein-rich foods like meat, eggs, and dairy. When you eat a large protein meal around the same time as levodopa, these amino acids can block or delay levodopa absorption, leading to weaker symptom relief or unpredictable "off" periods.
Instead of consuming high-protein meals with your dose, try taking levodopa on an empty stomach or with a small low-protein snack. If you require more protein, consider shifting it to your evening meal when the impact on levodopa effectiveness is minimal.
By managing your daily protein intake, you can maximise levodopa absorption and improve symptom control, helping you maintain better movement and energy levels throughout the day.
Action tremor, not resting tremor, no positive response to levodopa or other Parkinsons meds; i'd definitely keep seeking other possibilities/specialists. If not done yet get a Dat scan.
i am suffering through this very issue - Dx'd with PD due to a DATscan and clinical observation; despite C/L and other meds doing nothing.
my symptoms and progression match exactly with MSA but the neuros won't even discuss it (i think medicare has something to do with this - once Dx'd always Dx'd). no further testing or referrals .... just use C/L, in continually increasing doses until you are so doped up you don't care anymore and can no longer do anything, seems to be the universal answer.
so, i continue on with supplements...which seem to help ~60% effective; at least enough to keep functioning. and, in case anyone wonders, macuna is not in my stack.
I hear you! The c/l makes me feel worse and increasing the dosage decreases my mobility to the point where I can barely walk as my leg starts to seize up which then is a vicious cycle because I can't exercise and can barely leave the house. C/L seems to exacerbate all my symptoms to the point where I am starting to question myself and if I am losing it because it seems no one is listening. I have always been active and healthy and can count on one hand the amount of times I got sick. I am in tune with my body. I am all for supplements. Just started high DHA. Hoping it will help with tremors. Thankful for this group and their wealth of knowledge and shared experiences.
it seems you found dr,misney's page. i found 4g/day of Vthrive DHA helpful; have now, after ~2mo., cut back to 1g/day. Yes, this group has been my best resource for beginning to think for myself.
Any demand to continue taking levodopa at this time is absurd, illogical and counterproductive. Levodopa is strictly for symptom relief. In my case it had a beneficial effect on the first dose. In some cases it takes longer. In any case you have demonstrated it's not helpful for you. I do not know exactly how long and how consistently you have been using it. If a body has become used to it, tapering is in order rather than quitting cold turkey. I do not know if this applies to you or not. If this were happening to me I would make it my first priority to get off of this medication.
I was unsure whether I should feel the effectsrather quickly or if I needed to wait it out a few months. I have been on Parkinson’s medication since last July however they keep switching them up to something different every few months due to my side effects.. The latest combo of carbidopa and amantadine I have been on since the beginning of February. When I weaned off the previous medication I was on too quick (amantadine and Benserazide) and I was extremely sick and weak for almost 10 days. Lesson learned I will take it slowly this time. Thanks for the reminder.
You are well beyond the longest time needed to demonstrate this medication could be effective. Parkinson's tremor is a resting tremor rather than an action tremor. Overall your picture is not a good fit for Parkinson's. I think a different diagnosis is in order, and that is not bad news.
Thanks that is reassuring. I thought I was maybe being impatient with the process. Having this group and their knowledge/ experience is definitely giving me the confidence to speak up more and question things with the doctors.
I agree that multiple months is long enough to evaluate whether C/L is having a net positive effect.
Simply classifying Parkinson's tremor as a resting tremor rather than an action tremor can be misleading. Is is much more nuanced than that and there is plenty of literature to document this. I can also personally attest as I was initially evaluated for an action tremor and had a general practitioner specially tell me it was not Parkinson's. Thankfully he referred me to an MDS neurologist who quickly diagnosed me with Parkinsonism, later confirmed to be Parkinson's disease due to: positive response to meds, positive DaT scan, presence of other symptoms (bradykinesia, dystonia, rigidity, masked face, loss of smell, small writing, low speech, and on and on, etc. amen)
"In the literature, action tremor is usually referred to as either kinetic or postural tremor. Tremor in PD was recently subclassified into four categories based on its phenomenology: Type I, in which tremor is of a pure resting component of 4–6 Hz; Type II, where resting tremor is associated with an action component of similar frequency; Type III, in which patients have an isolated action tremor; and Type IV, where a mixed resting and action tremor coexist, each with variable frequency, and the patient may have features of ET in addition to PD [8]."
"Tremor is one of the most visible features of the disease, and rest tremor is often the first PD symptom noticed by patients (4). More than 75% of PD patients experience rest tremor at some point during the disease course (5–7), and ~60% of patients experience symptomatic tremor during action or movement (8–10). Although the near-ubiquity of tremor in early PD is beyond dispute, the distress caused by this cardinal motor symptom is commonly underappreciated (11). Tremor in early PD patients is currently managed pharmacologically. However, medications offer limited relief from tremor and may lead to disabling adverse effects."
This piece gives a nice summary of different pharmacological treatments for tremors in PD and their relative effectiveness:
Unfortunately, there is also some research out there that suggest that action tremor are less likely to respond or less responsive to meds than resting tremors. I believe this also to be the case based on personal experience.
This is great information. Thank you! Yes I have been told on numerous occasions that the action tremor would likely not respond to meds which I can accept. It is the walking at this point which bothers me the most and for which the meds are making worse.
Diesel4 -- Your situation strikes a chord with me. Just based on personal experience, I'd question whether your PD diagnosis is accurate.
My personal PD diagnosis was based on observation, as opposed to tests of any kind. Much of the diagnosis was based on movement issues with my left hand/arm.
Several years ago I started experiencing painful muscle spasms in my left arm. My neurologist at the time did botox injections which addressed the symptoms. Silly me, I presumed this was all Parkinson's related. Fast forward: My current neurologist's PA observed my muscle spasms, and told me that these were NOT Parkinson's related. (...then what are they?....)
Fast forward again: The cause for the muscle spasms and other left arm pain symptoms is cervical radiculopathy --- arthritic condition in cervical (neck) spine , causing bone spurs (among other things) that pinch the nerves. I'm scheduled for ACDF surgery, and cannot wait.
At the same time, my new primary care doc has referred me to a neurologist who does thorough and detailed testing to confirm a Parkinson's diagnosis. As I understand it, this neurologist does a "dopamine scan" test (if I'm recalling the name accurately) that takes five hours. ... (One of my doc's patients went to this neurologist for testing, and learned his Parkinson's diagnosis was incorrect. )
I have a feeling that inaccurate Parkinson's diagnoses could be a very common thing. It seems we're still in the dark ages when it comes to accurate Parkinson's diagnosis and treatment.
Interesting! I often wondered about pinched nerves as my symptoms started 6 months after being dropped on my head and suffering from a concussion. How did they diagnose? MRI? All the best with your surgery. Please let me know how it goes.
The "Syn-One Test", a skin biopsy test, demonstrates high accuracy in detecting phosphorylated alpha-synuclein, a marker for synucleinopathies like Parkinson's disease, with sensitivity and specificity exceeding 95% in studies.
Hi, I was put on rasagaline about 8 years ago (I've had yopd for 10 years) and it didn't work for me. I now take MacuDopa day and night capsules, a new UK mucuna product which my practitioner recommended. Have you tried any other natural forms?
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Is it me or is it my meds?
have to get better nutrition 
madopar, strange reaction
Chronic nausea anyone?
My husbands face to face visit with his Neuro!
