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 do plan on attending Sunday’s call. Thanks for the link.
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,
I’ve seen a general neurologist and a movement disorder specialist. They both said Parkinson’s after looking at my DAT scan and doing a physical exam. I’ve got an appointment with the Mayo Clinic next month. I don’t think they will tell me anything new but it’s worth a try.
Thank you! I’ve decided I will go. Always good to have another set of eyes look at things.
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.
Yes but as a preliminary item for quick testing it's just fine and adds to the compendium quickly and easily. It was a very good suggestion.
I’ve thought of that and will talk to my movement disorder nurse tomorrow. I’m also seeing my acupuncturist tomorrow and am hoping she can help.
I’ve been very hesitant to start the meds because of the risk of dyskinesia. I’m going to bounce some ideas off my movement disorder nurse tomorrow. Hopefully I can stick it out until I get to the Mayo Clinic next month.
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
I was visiting my daughter for 10 days and decided to not take any of my supplements…I actually felt worse. I started them back up as soon as I got home. I’m going to take pictures of all my supplement bottles and take them with me to the Mayo Clinic.
Could be you need some or most but one or 2 might be giving you problems. Report back if you get some answers. It will be good to know.
Will do.
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.
Excellent suggestion. Thank you. I will probably just take photos of everything. I carry the list in my wallet, but not the brand names.
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
I may have to consider that (especially if I can’t tolerate the levodopa) but it would be a hard adjustment. The people I know that do it for weight loss struggle with the restrictions.
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.
Not suggesting the below is what you have, but simply pointing out you can have an auto-immune response to some vaccines weeks after the fact.
This summer, I experienced what I believe was a "mild" case of Guillain–Barré syndrome 4 weeks after getting a tetanus booster. My legs began tingling as if they were "asleep", then went numb spreading upward from my feet, and it became increasingly difficult to walk. My blood pressure and pulse became erratic, and the numbness/tingling eventually moved into my hands and face. Fortunately, these symptoms plateaued and began tapering off about 10 days after they began, and before I could get into the Dr.'s office.
I know that doesn't sound like "mild" symptoms, but if you read what that syndrome often leads to (complete paralysis, ventilation, feeding tubes) my case, if it was GBS, was indeed very mild. In retrospect, I should have gone to the E.R., because this syndrome can rapidly escalate to life-threatening paralysis of the diaphragm. I'd never heard of it before, but once I started researching the symptoms I was having, I learned that while it's very rare, and usually caused by an infection, it can be triggered by some vaccinations with about 1 in a million odds.
The good news is that there are treatments available which can stop the progression if it is diagnosed quickly enough.
That had to be scary! I’m going to call my movement disorder doctor’s nurse tomorrow (she’s been WONDERFUL) and bounce some ideas off her.
There is mercury in the multi dose flu vaccine
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 don’t really have any numbness in my legs (I do along my jaw and neck). I get occasional tingling in my toes. I’m hoping the Mayo Clinic will do a full blood panel. My primary care doctor ordered one but I don’t think it was comprehensive enough.
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 thought that maybe some of my symptoms might be neuropathy so I tried Cymbalta (it’s an anti- depressant and helps with nerve pain). Unfortunately I had to stop it before getting to a therapeutic level because it made my heart rate increase significantly. Apparently that’s pretty common.
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
Thanks for the info. I’m going to check out the books you mentioned.
my partner had no sense of smell (we thought COVID) insomnia, vivid mental dreams, shoulder and the tricep issue for a long long time before being diagnosed - we have only been together 4.5 years - he was diagnosed end of October - no pharmaceutical drugs given yet
I’m sorry to hear that. This disease is horrible and unpredictable.
I tried a lidocaine patch on my tricep last night and for the first time in weeks, I woke up with no burning or pain in that arm.
Awah thank you 🙏🏻 and that’s brilliant news re the patch x 😃
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
