I am not convinced that I have PD. Could ... - Cure Parkinson's

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I am not convinced that I have PD. Could anyone tell me if they have had any of these experiences?

Darkflower profile image

has anyone on a regular basis gone to bed and taken Rytary and not have to take it again for 12 hrs later. This is even after you have been awake for 2 to 3 hours? with no tremors?

Do you take Rytary or Sinemet for the symptoms of being stiff but your tremors re fine?

Does anyone experience Dystonia like attacks where your limbs and body twist into painful positions? and bends your neck backwards making it hard to breath, swallow, or speak? Or experienced the bending back of your neck so far it cracks and pops from the force of muscle spasms until you can only yell for help and your tongue spasms uncontrollably? MY Dr prescribed Apokyn shots for when this happen.

Does anyone take Rytary and it makes your mind so anxious you can hardly stand the anxious feeling that you get?

You can go 12 hrs at night and then get up for a few hrs and then the first set of pills you take gives you severe Dyskenesia.

or right after you take your PD meds (within 5 minutes) your tremors just stop? No meds that i know off work with 5 minutes........... do you know of any?

when I take my Rytary I get really warm to the touch and then have the chills for 1 to 2 hours.

If anyone that has PD or knows someone with PD that has these or similar symptoms could take a few minutes to answer these questions it would be very much appreciated.

thank you, Amy

18 Replies

I suggest you start a notebook and keep track of when you take your meds with the dose and what you experience marking the time it occurs. Take this to your MDS or Neurologist so he can see trends and better understand how your meds are working. He/she will be able to see if there is a pattern and better decide what meds to prescribe for you. Best of luck to you.

It is typical for the best time the day to be upon waking – it is true for me and others have said the same. I can go for a couple of hours then before taking any medication. This phenomenon is probably because the brain is able to store up some dopamine while sleeping.

My tremor is intermittent - sometimes none at all.

The muscle spasms you describe sound more like dyskinesia than dystonia. This is a result of too much levodopa. Which medications are you taking and what doses?

Trixiedee profile image
Trixiedee in reply to park_bear

Yes definitely sounds like dyskinesia that you’re describing which is from too much l-dopa.

Seek another Neurologist for second opinion. I believe you are on the right track . I would vote NO for Parkinson's and good bye to the doctor. Unfortunately that may not be good news. But then what do I know.

My husband has that extreme anxiety from levodopa and sertraline.

Darkflower profile image
Darkflower in reply to LAJ12345

I feel sorry for your husband. Dealing with anxiety is miserable.

@darkflower, yes to everything you said in here and I can definitely empathize with you because I have suffered terrible episodes like you describe and somehow after two long years, I am now in a good spot. I am at peace with myself and the world and I am glad to answer your questions.

First, you need to get over your doubts about your diagnosis. I presume that you are in the USA because of the Rytary. If so, you are have probably gone to a MDS for diagnosis confirmation. If you have not, pl do so and only in an university teaching hospital. I think that is where the best of them and indeed most of them are anyways. The good doctor on the strip mall with a shingle that says "Neurologist" might be good, but not a Movement Disorders Specialist.

Next, understand that all Levodopa is not Levodopa 🤔. Various forms of Levodopa are manufactured in different ways with different proportions of the key ingredients and they all evoke different responses in different individuals. Recently, a spate of new medications are coming to the market, all approved by the FDA. Plenty more are in the works and the MDS community is having a hard time keeping up. Don't be surprised if you know more about the medicine than they do and the younger generation of doctors in their late 30's and 40's understand that patients like us like to play "Google Doc" 👏😅👍

Rytary is an extremely complex medicine that is notoriously hard to customize for the individual patient. Many patients strike gold at the first dose configuration, while others like me, take two years to get a handle on the exact right protocol. In my case. the doctor put me on a " drug cocktail", meaning that I take other medications along with Rytary, which includes Ropinorole, Nourianz and Amantadine. What you don't want to do is to give up and search for the next best "solution" out there. The grass is always greener on the other side 😊 and once you cross the lawn if you discover that it was "fake turf", there's no going back. Rytary is a one way street, and if you will try to get off of it, it will be tough, dangerous and possibly lethal. I just wanted to put it out there because I tried to do so and had a date with near disaster. So if you ever decide to wean off the drug, please follow your doctor's orders.

Now, its not just all gloom and doom. When the baby works, it is pure bliss! Hands down. I will let you in on the billion dollar secret behind making it work like magic. Follow a hermit like diet and eat like a hermit and consume no protein during the day or night as the case may be depending on when you want maximum results. Rytary doesn't like to have any competition in absorption, so you need to give it just a few "friends". so that they can get along. So, while coffee with almond milk might be delicious and comforting with a well honed Rytary going to work, while you feel fabulous and so hungry that everything in sight looks edible , including your dog, coffee with milk or cream will make you feel like you just got thrown to the wolves in the dark forest🦬🌳🦂. Lol, I couldn't help myself here....😛

It keeps me in check 😩🙄🙋‍♂️LoL. I am fat and diabetic and well on my way to a lean and sensible next new decade of my Parkinsonian life. My wife is happy that I finally have a "dog collar" and she wants to personally thank the chemists who she believes saved my life!

Anyways, bottom line is that yes, it is a difficult drug to prescribe and yes it works and I am bold enough to say that I will name my next child after you if it turns out that your Datscan heresults in a negative differential diagnosis 😂🤣😉

The medicine appears to act in 5 minutes because of the powerful placebo effect that is puzzlingly unique to Parkinson's. 5 minutes, you say? Try 5 seconds in my case!!

RKM

parkylot profile image
parkylot in reply to pdpatient

I agree with what you said about Rytary not wanting protein competition. I’ll switch to almond milk for sure.

An on line veggi yogi eats one meal a day around 5 pm. Works into my PD protocol nicely. That being said my GP wants a follow up visit because I’ve lost weight.

pdpatient profile image
pdpatient in reply to parkylot

LoL, @parkylot, online veggie yogi? 😂🙏😁 Sounds promising. Tell me more!

About the weight. Did you want to lose the weight or was it a regrettable loss? GP's get quite concerned with their patients losing weight, all of a sudden, even if it were for a good, known reason.

RKM

kaypeeoh profile image
kaypeeoh in reply to pdpatient

One of the signs of PD is loss of sense of smell. I was on medicine that did that and I lost a lot of weight simply because I couldn't taste things like chocolate cake and had no interest in trying it.

Darkflower profile image
Darkflower in reply to kaypeeoh

I am lucky that I have not loss my sense of smell all together> That is just it, alot of the symptoms of PD that are common I don't have issues with like sense of smell. I am still able to smell flowers and perfume. And when i say go extra hours between taking my Rytary, I don't mean just a few hours. it is always at night - i take my meds and go to bed - i have been sleeping in alot lately (depression). i can go to bed at 5pm, wake up in the middle of the night and once in awhile i feel like i need an additional dose of Rytary and back to bed until the next morning and wake up from sleeping 5pm to 6 am or 7 am and feed my cats and then do my paperwork on the computer. fOR EXAMPLE it is 10:16am and i still havent needed my meds. DOES THIS NOT SEEM ODD AND LIKE A LONG TIME BETWEEN DOSAGES. ?????????????i havent had any meds except for the 4 RYTARY iii took at 4am and prior to that 7:47pm the night before when I went to bed. I don't always experience this, sometimes it is more like every 4 to 5 hrs during my awake hrs. DOES ANYONE ELSE EVER EXPERIENCE THIS LONG OF A PERIOD BETWEEN TAKING THEIR MEDS?.

MY schedule: BED 7:47PM, up in the middle of the night, ate snack, went back to bed, up at 4:09 am. took second dose of Rytary and been up since approx 5a.m. and it is now 10:27 am and still not taken any more medication. that seems like an awfully long time. or is it just me? I am not a newly diagnosed person................i have been diagnosed when I was 28 yrs old and I am 47 years old now.

anyone care to share their thoughts?

maybe my Dr is right and every one varies and has different symptoms or maybe it is just wishful thinking?

kaypeeoh profile image
kaypeeoh in reply to Darkflower

I didn't believe I had PD until I had the DAT scan which proved I did have PD. I guess I'm lucky to not have many of the common signs.

gwendolinej profile image
gwendolinej in reply to kaypeeoh

Hi there, you say you lost your sense of smell. Obviously taste as well, which isn’t mentioned here as often as smell. My husband lost his sense of taste early on. He now says he eats to live, whereas before he lived to eat ( and drink a good red). We try many supplements in the hope that it may be restored, but no luck yet. One of our members got his back with mannitol, but it hasn’t worked for my husband. We have managed to improve many symptoms, but not that one.

Did you get your sense of taste back. If so, what med was it?

Gwendoline

kaypeeoh profile image
kaypeeoh in reply to gwendolinej

It was decades before PD. I had LASIK and used steroid eyedrops post surg. Lost the ability to taste sweet. Everything tasted bitter. It came back once I quit the drops.

parkylot profile image
parkylot in reply to pdpatient

RKM I’m 5’8” 140 lbs. I’m active; yoga, spin, walking. I lost weight because of lack of protein. But it was as you say, all of a sudden.

I’ve been eating one large meal at night with protein. I’ll see her tomorrow and will tell you.

Dark flower, you really need to speak to a good MDS . Make sure he knows what meds and supplements you take and when you take them. Also what you eat and drink can be important . Mornings used to be my best time but not anymore. I have bad dystonia in my legs that goes away when the first dose of Rytary and Sinemet kicks in.

DYSTONIA VS DYSKENESIA I think i know the difference between the 2 symptoms, DYSTONIA and DYSKENESIA (correct me if I am wrong)..DYSTONIA is caused by a side effect of taking PD meda like SINEMET which is also treated by taking PD Meds like Caropa Levadopa which causes your body to twist and turn in painful and odd positions.) It usually starts in your feet and gradually spread to the face. neck and head. it also can cause uncomfortable facial spasms in some individuals. It usually takes a injection of APONYX or SINEMET.

DYSKENESIA- is caused by too much CARBIDOPA/LEVADOPA meds and causes a swaying motion and it it hard to sit still (much like the movement of Actor, Michael J. Fox. It can also pull your body into odd positions but you do have some control over the movement. Example; Bending your head to the side, muscles tense but you can lift your head up ubtil it wears off.

I feel like I do not know as much as I had previously thought ............that's why i am asking your help and advice.

Sinemet is the brand name for Carbidopa/levodopa. They are the same thing. Dystonia can be a symptom that is resolved by c/l and/or it can be a side effect of c/l. Dyskinesia is most commonly caused by too much c/l, but it can also occur during other phases of the med cycle: leading up to peak dose and wearing off from peak dose.

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