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.
Not responding to meds: Started having... - Cure Parkinson's
Not responding to meds
What symptoms led to your PD diagnosis? I assume it wasn’t just the action tremors, right?
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🤞
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.
”neurologist told me he is not comfortable giving me a Parkinson’s diagnosis until I respond to the medication”
Whaaat? Maybe you don’t have PD then if levodopa makes no difference?
Respond or else!
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.
Hi
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 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?
Best wishes!
I had read about DaTscan on here but it was never offered. I am in Canada I will ask for one at my next appt.
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.
DaTscan wil be my next request. I have learned so much from this community. Thank you all so much!
Hope all.goes well but keep researchingI'm trying out ivermectin for WWP
Here's hoping
I am curious if you are having protein rich meals before/after taking carbidopa/levidopa meds.
Your neurologist or MD Doctor should inform you about protein and levadopa intake.There are guidelines when to take the levodopa tablets.
Usually 30 mins before eating or 2 hours after eating but this is all with respect to what you are eating protein wise.
i. e
A half chicken or a big steak compaired to a fruit breakfast or a sandwich lunch
You might have one of the conditions listed underParkinsonism. Reference:
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.
madopar, strange reaction
Vision Problems with PD
Leg Cramps when taking Sinemet
Possible adverse reaction to a new generic brand of carbidopa/levodopa. Has anyone else experienced this?
Meds during DaTSCAN?
