Please help with your experiences

[AaronS]

Hi Friends

Ill post this in dot point so its easy to read;

-DX early last yr at age 35

-Tremor initially was resting but now changes between resting (L&R arms and hands), activity based (L arm & hand) and general muscle twitching thruout my body

- Left arm hangs with a bend in the elbow and doesn't swing (unless medicated) right arm is fine

-if I rest whole body completely any tremor present stops

-if distracted tremor stops

-stressful or anxious moments tremor increases

-pill rolling motion not present any more even resting

-differing frequencies with the tremors

-left shoulder is being managed as a frozen shoulder , but shows slowness ad weakness, right arm is fine

- im on 2 pills a day but down from 1.5 - 3 times a day, sometimes I can manage to miss meds up to 2 days at a time, without any symptoms,

-meds only affect tremor and free up my left arm and hand 50%

-Vertigo seems to be present and increases if I miss meds for 3 days (just a litte bit), the vertigo was much worse prior to meds

-overall I feel so much tension in my body sometimes, sleep, depression are no issues, no facial mask is present according to my wife and I don't have fatigue

Cherry on top:

my sister (34) started to show PD symptoms and was referred to a Neuro who believed it is due to PTSD with the body reacting out after a very very poor upbringing, I initially gave her some of my madopar which gave some relief but the seizure meds she was prescribed have worked much efficient, her neuro feels based on our ages and no precursor relatives with Parkinson's, im potentially suffering the same.

What can you tell me from my situation and your life experiences with PD, as I see my Neuro tomorrow and feel a little bit lost.

regards

Aaron

[park_bear]

Most of your symptoms are typical Parkinson's. The only one that stands out to me as being atypical is the activity tremor. Parkinson's is known to have more than one cause - genetic, toxins, Lyme disease - so perhaps PTSD from a traumatic up bringing needs to be added to the list. Which medication(s) are you taking?

[AaronS in reply to park_bear]

Hey Park_bear

I take 1 azilect and 2 Madopar 125mg tablets a day, thing is I can operate quite well without them.

[park_bear in reply to AaronS]

OK. It pretty much seems like Parkinson's to me but if seizure meds work better than would be interesting.

[AaronS in reply to park_bear]

Thanks mate, I'm not trying to get out of my situation, just merely after advice from those that know better than I do.

Much Appreciated

[JAS9]

If you want to investigate the PTSD theory, here's a link to a free online book which suggests similar ideas. It's a bit controversial to say the least, but I think we all deserve a chance to decide for ourselves. There are other free books on this site too, but I would start with this one: pdrecovery.org/stuck-on-pause/

[AaronS in reply to JAS9]

Thanks for this Jas, I'll def do some reading

[JohnPepper]

The muscles twitching sounds to me like dyskinesia, which is a caused by too much levodopa in the brain.

Resting tremors are just that. The moment you use the hand that has the tremor then the tremor disappears. It is not magic! If you don like the tremor then lightly clench your fist or splay your fingers out. Then you are using the muscles and you don't have a tremor

What the doctor isn't telling you is that Pd affects movements we do normally without having to think what our arms and legs are doing. Like walking! You don't think what your legs and arms are doing when you walk. That is controlled by what I call the subconscious mind. The moment you consciously think about moving your arms and legs you have no problem doing it. Taking levodopa medication merely temporarily gives your brain more dopamine, but when that is used up, you are back to square one. If you learn to use your conscious brain to control your movements then you can walk normally.

[AaronS]

Thank you John

I appreciate your response, and time in reading my post. I just wanted clarification cause my neurological DR doesn't explain things clear enough, and I'm naturally a mechanically thinking person, so I tend to break everything down.

Well I went to the neurologist today and he feels I operate at 95% due to the fact I keep moving and regularly exercise, he got a little bit stroppy that I only take 2 pills a day and the fact that I miss days of pills , but oh well you can't win em all.

Thank you for your knowledge shared mate

[justjohn46]

hi aron well i understand your problem its not 2 bad yet well for me i give up years ago well i used to take azilict i give azilect up years ago as it did nothing for years well if it was me i would take 3 madopar 200/50 some people take madopar 200/50 5 times a day thats the most you can take in a day but you would have to be very bad to take 5 i take 3 250/50 a day have you tried sifrol for your shakes read up about the sifrol i take them every day you might want to read up about salpraz as well.hope this helps regards john.

[gingerj]

Hi Aaron I too was prescribed 3 tablets a day but only took 2 for nearly a year. I did eventually go up to three. My neurologist wasn't too phased as she said it's my choice. However I did read that you need at least 70mg of carbadopa a day to restrict the amount of levadopa being converted to dopamine before it enters the brain. 2 100/25 sinemet was only giving me 50mg. I definitely need my sinemet but I don't want to take more than necessary. I too take azilect.

[gingerj]

Oh yeah I was originally prescribed beta blockers for my tremor. They helped a bit. My neurologist suggested I try anticonvulsants too for the tremor but I went for sinemet as an overall med to help with stiffness too.

[sledge]

Your neurologist acknowledges you're at 95%--his assessment.

By any measure, you are to be applauded, rejoiced with, and encouraged in your course.

Yet, he's miffed. I could understand concerns if C/L dosage was curative, but it's not. It provides symptom management only. And yours are being managed unusually well.

If there's one thing that's certain about Parkinson's, it's that each person manifests symptoms differently, and each responds differently to medications. Most neurologists understand this, and accept that dosages and frequency are a moving target. It requires careful noting of worsened symptoms AND improvements on any given dosage. And you've hit on that sweet spot. The issue seems to be that you're doing it on one less pill he told you to take, based on a 15 minute consultation every six months. You live in your body 24/7, 365 days a year. My money is on you.

On the other hand, you say that your neuro is not good at explaining things clearly.

Maybe his reaction to your dosage change was geared more to your skipping days at a time, in which case, there is a valid point of concern. Sudden cessation of C/L can cause a dangerous reaction called serotonin syndrome. If he didn't explain that to you, and just came across annoyed in general that you deviated from adherence to prescription on general principal, he missed the boat. Let him know that you need to understand the reasoning for things so you're on the same page. Maybe he's just used to patients who prefer to be told what to do without all the burden of detail.

[9284]

Hello First I'm sorry that you have PD but with good specialists helping it is manageable

My husband has PD and takes Madopar but if he misses any doses in suffers badly so I'm surprised that you can miss a couple of days

I hope you are able to come to terms with your situation

Good luck 😊