I was diagnosed with Parkinson’s on 8/8/24 with a mild tremor in my left hand and a slight twitch in my ring finger on my right hand. Both tremors are still mild but I’ve developed some concerning symptoms. A few weeks after diagnosis, the tricep in my left arm started to burn and hurt. I messaged my movement disorder doctor and he said the tremors were probably burning out the muscle. Problem is, I don’t feel any tremors in my tricep. Last year I had some facial surgery that had completely healed but now my jawline has an altered sensation which goes down the front of my throat. It’s not painful, it just feels tight. Again I messaged my doctor and he said it was not a typical PD symptom and to contact my original surgeon. Lastly, I messaged my doctor saying my legs felt kinda weird…jittery and heavy. He thought it was due to my workout routine (which I’ve done for 4 years). How do I know if this PD progression or something else? With the exception of the burning in my left arm, my doctor does not think it’s PD related. I know my body and something is going on. The PD is either progressing very quickly or I have some neuropathy going on. Has anyone else had similar symptoms so soon after a diagnosis? Someone on this forum mentioned they were very happy with Synapticure. I met with their genetic counselor already and I see their neurologist in February for a 2nd opinion. I thought when I was diagnosed, that my hand tremors would get much worse before spreading elsewhere. That was just probably wishful thinking.
multi-level concerns: I was diagnosed with... - Cure Parkinson's
multi-level concerns
I don't have any answers, but if you join one of the Zoom calls MBAnderson is so nice to host, you will find lots of people with tons of experience you can bounce these things off of. The Sunday call has a good large crowd of nice people. You will be welcomed.
us02web.zoom.us/j/833522248...
Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)
Sundays, 11 am – 12 PM-ish, US CDT.
Thank you. I notice there are 2 days listed. Is Sunday a repeat of Thursday or are they different?
They are different calls. The Thursday call does not get nearly as many participants, but the ones who do attend are better looking than the Sunday crowd.
I have overuse injury from tremor including in muscles that do not seem obviously related to the tremor. Your MD is pretty smart for recognizing this as many do not. More detail here: healthunlocked.com/cure-par...
As to the other symptoms I'm not sure if they are Parkinson's or not. Hopefully others can provide some insight.
Thanks for the info. I went to the chiropractor today and I told her about the pain in my arm…she verified there is a tremor in my tricep…but the tremors in that hand are very mild
I received notice today that the Mayo Clinic in MN is willing to see me. I’ve scheduled an appt for early January. You seem very knowledgeable. Is it worth the trip? I don’t know what they can possibly tell me that I don’t already know. My husband thinks I should go because he’s of the opinion, leave no stone uncovered.
It’s good to talk to a high level expert but your sounds pretty good! As you’re going along your symptoms will all become more noticeable and it’s good to have a second opinion now and then so it’s good to start baseline. It’s good for them to get to know you before you become a very old experience PD person. I’d go.
Thank you! I knew the disease would progress but not this quickly. In July, I had reduced arm swing in my left arm and very mild tremors. 5 months later I’ve got a whole lot of other symptoms. I am going to go, as long as I can get there. A 6.5 hour drive in the winter can be pretty scary.
I have the same problem. I tell people I have turbo Parkinson’s because I’ve gotten downhill so quickly despite doing rock steady boxing, doing Pt, and walking a mile daily…until I couldn’t because I was using a walker all the time. Cl worked great forme at first but now it works at all. diagnosed in 2021. I am hanging all my hopes now on God and DBS.
Gallowglass . Have you been ruled out for PSP?
ninds.nih.gov/health-inform...
Don’t know. Cl used to help a lot. I’ve had the DAT SCAN, mri,
If the symptoms that are bothering you are relieved by the standard carbidopa levodopa medication, then that would be a clue that they are part of the Parkinson's package.
Good luck with your treatments, and don't despair!
I have not started meds yet but messaged my doctor yesterday about starting.
A word of caution Concerning Levodopa medication. When I was diagnosed back in 2013 my neurologist urged me to delay commencing them for as long as possibleTo maximise effectiveness long-term. Good luck.
are you taking any meds or supplements?
I take no meds but I do take a ton of supplements (including b1 and cinnamon). I I have a message into my doctor about starting meds. I can handle the pain in my arm and my hand tremors, but this leg thing is completely different.
SeeI would look at the supplements as a possibility.Can you list them here with quantities of each?
Eg which form of b1? How much?
What brand and type of cinnamon and how much?
We might find a clue to your symptoms.
Eg cassia cinnamon should not be taken in large quantities. Make sure you are using Ceylon cinnamon. It can lower your blood sugars which might make you jittery.
Are you following Daphne's b1 protocol? Have you tried stopping b1 for a week or 2 then restarting at a lower dose?
Perhaps there is an essential nutrient you are missing. Or if you are taking b6 and other b vitamins they must be in the natural forms. What brand? Too much or little b6 can cause neuropathy
You very much need to bring a comprehensive list and samples of all of your supplements, probably the original bottles you are using at the moment, to your meeting at Mayo. If you don't, your trip may be a waste because of potential masking and interaction of substances that could be giving false signals or could be adding complications that would be very difficult for a doctor to work with without having them available.
And you need to also bring a printout from your pharmacist about what other medications you are taking. And then list the over-the-counter medications you are taking and bring bottles as samples also.
What meds are you taking. I was diagnosed with much the same symptoms as you. I was sent out with prescriptions for Azalect and c/l. everything got worse. after 3 months I put the meds in the bin and got on a keto diet, B1 and a few other supplements. That was 6/7 years ago and apart from tremors getting worse I am in good shape and still med free. Waiting for something to come along to help with the tremors
Just a thought. Have you had any vaccines lately?
I did have the flu shot and i got the Covid vaccine 2 weeks ago. Is there a correlation?
Maybe it’s a reaction to the vaccine?? Did you get it in the affected arm?
I did get the flu shot in the affected arm because it’s my left arm and I am very right handed. I’ve always maintained my left hand/arm is there for balance. I got the Covid vaccine several weeks later in the right arm. The pain is in the underside of my tricep. I’ve been using a heated massage gun on it. Hurts like the dickens.
Are you feeling any numbness or tingling? If so you could be experiencing neuropathy which can also create the sensation that your legs feel heavier or weaker than usual. I would get your blood levels checked particularly B12 and B6.
I initially went in to my doctor about my neuropathy symptoms: tingling, numbness, heaviness, palpitations (which I now believe to be inner tremors). I believe all my symptoms to be PD related and the neurologists are unaware of the scope of symptoms that are related to PD. I take gabapentin for the neuropathy symptoms but I have heard Lyrica is typically prescribed? I hope you find answers and relief!
I have frozen shoulder and get burning in my tricep on and off. I do the B1 therapy and take the rest of B vitamins and magnesium which seems to help keep progression from happening or at least slow it down. I do take mucuna pruriens instead of C/L.
I would like to know what magnesium, mucuna , and b vitamins you take?😀
I recommend joining the FB groups and reading the books that cover this. Daphne Bryan is the author of the B1 book and Dr. Maldonado is the author or the Mucuna book. It is best if you read the information yourself and make your own determinations.
Thanks
Taking C/L on demand vs regularly
Some questions about medications from someone who's isn't taking any yet
Mucuna Pruriens is a life saver
