I have thousands of 'internal' tremors.
Mostly in my arms.
But sometimes my eyelids.
And sometimes the left side of my face.
I've been to a neurologist, MDS.
He's a moron.
So just wondering what your particular situation is like if you have tremors.
Did they start as 'internal' tremors?
thanks for the feedback
Is this the same MDS that you have previously described as your "top MDS doctor"?healthunlocked.com/cure-par...
What caused your view of him to deteriorate?
you have a good memory... he may have the right 'credentials' ... but like most doctors these days... they have a 'daily schedule to keep' ... That means seeing 20 - 25 patients per day. He gave me a PD exam. These are his EXACT words to me after the exam (without bloodwork or scans):
"The good news is that you don't have Parkinson. The bad news is that you don't have Parkinson."
You see what I mean about a 'total moron'?
I prepared a MOUNTAIN of EVIDENCE of my condition for him to review.
He barely looked at it.
They generally ought not dx PD without signs of bradykinesia and and least one of resting tremor or postural rigidity. They def wont do it based on internal tremor alone.
I would say that internal tremors can be a prodromal pd thing, but arent necessarily. It could be a frustrating 5 years, but you should try to enjoy them while you can.
how long have you had PD?
Hey, kevowpd "how long have you had PD?" I'd like to know too 🙂
do you have "internal tremors" with "no" external tremors, like me?
No, mine are action tremors vs resting tremor. Not everyone with PD begin with tremors. My mom was "pill rolling" I've seen my sister's dominant hand do it too when she didn't realize it. What other symptoms do you have?
i have
*thousands of internal tremors, mostly in arms -- but everywhere
very mild... very intermittent .... not disabling in any way...
*left face (very seldom the right face, too) -- numbness, tremor, tingling
*both eyelids have tremors... although it is very minimal the last few months... I used to have to rub my eyes to make them go aways... i have done that in a long time....
*sensation something in in my eye (either eye) ... lasts from a couple of seconds... seldom longer than that... i get a couple dozen of those daily
*feet cramping... lower left leg cramping
correction
*have NOT rubbed my eyes in a long time
A quick web search says it could be part of PD syndrome but I don't think a neuro would diagnose PD on this symptom alone. Could be prodromal and this means you have an opportunity to for early intervention. Could this be attributable to vitamin B deficiencies?
that's EXACTLY what my neuro/MDS... said... LOL...
but... he completely ignored my 200+ page medical history (on flash with key points printed in hard copy) ... which explained I am taking 'over 30' supplements daily including every B vitamin ... individually... and 1,500 mg daily of B1 ...
but thanks for your detailed reply to my other post
I'm not trying to be dismissive. Vitamin deficiencies play a big role in neurological illness. 45% of people don't effectively convert beta carotene to Vitamin A, same with thiamine. Start with healing your gut, where these conversions take place - not as easy as it sounds. I learn a lot from Dr. Berg's videos. Peace 🕊️
SE
dr berg is one of my favorites!
i'm on day #261 of my O.M.A.D. (one meal a day eaten within a 2 hour window) to heal my gut...
also i eat more fermented foods and just bought a 6 pack of fermented beverage from Amazon... check this out
amazon.com/dp/B08MWX8CCX?ps...
I'm just getting started, you're way ahead of me. I'm learning so much!
Have you noticed improvement?
as far as my own personal 'improvement'... very hard to say because PD is weird...
i've got my "finger in the damn" trying to hold back the flood
so far, i'm doing it
i'm on no meds... and i plan to stay that way (i'm 70) until i croak from something else other than PD or its complications
since you are just getting started here's a post from last month in my reply to a woman/wife caretaker for her husband with PD
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All of our hearts go out to you and your dad. I read many of the posts below and they offer excellent suggestions... Here's my input... Considering your dad's age and current condition...
1) I have 2 (relatively large) massagers in my bed... I rest my arms on each one and it gently puts me to sleep... You can buy these on Amazon for about $90 or eBay for $60 each...
2) Get ... sunshine. It helps with vitamin D and serotonin production and it's ... FREE.
Various docs recommend at least 10 minutes daily.
3) Vibration plate machine!
These can be pricey -- I don't know how much they would be in Spain. I paid $500.00 usd for mine. But it is an amazing device. You just 'stand' on it... for a 10 minute session (more if needed). Or your dad could be sitting in a chair with his legs resting on the vibration plate.
There are good studies that show "vibration" is an effective self-therapy and non-invasive!
4) Sauna
I have a home sauna that I use 2 - 3 times a week, 90 minutes each session.
The body and brain needs/loves this type of 'stress' which helps it to recover even stronger.
5) Stationary Bike
If he can do this... THIS is a great way to get ... MOVEMENT... at whatever pace he can handle.
6) Diet
Of course you should check with your medical teams on anything that I've suggested for your dad's particular situation. Personally, I am on day #243 of the O.M.A.D. diet (one meal a day). I've lost over 50 pounds! ... And I can still eat pizza... potatoes... fruit!
There are many great health channels on YouTube that I watch (and learn so much!)....
Here are some of my favorites:
*Bob and Brad -- physical therapists
*Dr Eric Berg -- nutrition
*Dr Mandell -- nutrition
*Dr Mark Hyman, M.D. Functional Medicine
*Dr Josh Axe, Chiropractor and Doctor of Natural Medicine
*Dr Ford Brewer, M.D.
*Dr. Brad Stan Stanfield, M.D.
*Dr Rhonda Patrick, Biologist (fantastic channel, emphasizing nutrition and other therapies)
Her website: FoundMyFitness.com
*Dr John Bergman, Chiropractor -- FANTASTIC speaker and information
*The Brain Docs (husband and wife team) - both are M.D. and MDS specialists and head the neurology department at Loma Linda University, California
*Dr Ken Berry, M.D. -- down to earth and REAL... doesn't sell stuff...
*Dr Sten Ekberg, Holistic Doctor, Former Olympian
Another FANTASTIC website:
mybiohack.com/search?q=park...
----------------------------------------------------------------------------
There are over 3,000 international clinical trials going on RIGHT NOW
to manage, reverse, STOP, and CURE ... Parkinson.
So you and your dad... DON'T GIVE UP!
Blessing to you both!
Love this resource - saving, thanks!
welcome... just pass it along to others... and i find the best contributor here to be 'Bolt'... i think there's something else that goes with his handle... you'll find him everywhere... he's MY go-to guy for answers
I've been here quite a while only recently learning about autophagy and fasting.
Boltupright has contributed significantly to the knowledge base on this site.
yes, my wife would always sit tight along side of me and she said I was vibrating. Mostly in my upper body. That was before I had other symptoms and took that to my neurologist. I was diagnosed quickly after he rotated my arm and watched me walk.
thanks for the feedback... my 'tremors' are different... my muscles 'twitch' intermittently --- mostly in my arms... thankfully, i hardly feel them when i am active... but when i go to bed... i'll feel them a lot more...
I do have the same symptoms you were talking, these internal tremors or spasms in my eyelids fingers calves midriff muscles area under my arches. You can have these without being yet externally-tremor-dominant... Of course I have more symptoms such as RSBD (REM sleep behavior disorder), a DaT scan that says I'm in the Parkinson's area as far as significant deficit of dopamine production in my substanta nigra. So ask about a DaT scan.
Neurologists I have talked to said that a positive response to l-dopa is a clinical confirmation in lieu of autopsy. So ask about that.
There is a standard test as well that your neurologist could administer that would give a functional description.
I once had a neurologist who told me some of his patients are idiots, and I said how so? He said "they don't seem to give a shit, not curious, want me to spoon feed them, dismissive or not really willing to have a firm adult conversation between two grown ups about their condition, in other words, the patient doesn't want to help me help the patient. he said those kind of patients are difficult to work for and difficult to help, because of their attitude. Maybe it's part of their illness but in any case it's hard to work with a patient who won't help me a little bit. I end up feeling frustrated and don't feel like I can give them my best because there's some kind of passivity barrier they are putting up." So I hope that isn't happening with you.
So you may have early or prodromal parkinsonism as opposed to showing the next stage, which would be full blown Parkinson's. Prodromal phase can be many years or follow a gradual incline angle or gradually upward turning accelerating curve. What you might do is ask for a clinical test which would be a course of l-dopa and see how you respond so I would ask the neurologist about this and to discuss it more. It is your responsibility to be asking more questions of the neurologist, follow up conversational questions that lead somewhere, rather than waiting for the neurologist to just blurt out everything it could possibly be, you really do have to have that kind of a conversation where you are asking follow-up questions, "and what does this mean, what does it not mean, how about this, how should I be looking at this going forward."
For example, when he tells you "you don't have Parkinson's" you should be right there asking well then what do I have? Am I on the path to parkinson's, where am I in all of this, what do you mean when I the good news is I don't have Parkinson's but it's also the bad news? What does that mean exactly, please doctor help me understand all of this?" So you get off your proverbial mental butt and join him in an active conversation. Help him help you by showing some curiosity. Every time he gives you a comment, say "ok, well then what does that mean, and how should I interpret that, etc." An active conversation.
well i had prepared for almost THREE MONTHS for this appt... i had with me an over 200 page medical journal for him to review... and I offered him a flash drive with all of my data... he REFUSED to accept it! ... And i was .... STUNNED... when he said "The good news is that you don't have Parkinson. The bad news is that you don't have Parkinson."
-----------------
He went on to explain because of my age (70) -- i "could" develop PD. He also said... twice... that he could be 'wrong' in his exam determination... he said that... twice.
I was really so flaberghasted by his general disinterest in my substantive evidence... (and I didn't want to "fight" with my doctor on my first visit which took THREE MONTHS to see him!) Got the picture now?
So taking you at your word which you now have mentioned twice, he SEEMED fairly DEFINITIVE that you DON'T have parkinson's. Could be wrong doesn't mean he has feelings that he's as likely to be wrong as right. He just didn't get into why and didn't want to take the time to read your manifesto...
Do you suppose it was just that he would prefer to be the doctor and that you let him?
I haven't had very good luck with neurologists either and mine are at the vaunted Mayo Clinic and so far I have been disappointed over the discounting. They do seem to get a little cranky when the case is not easy to clearly define one way or another. Maybe there's just something about the selection process or the attraction process that selects for people who are not very personable. I've noticed the same about pathologists (the kind that work on dead people...and I'm guessing they go into a specialty where the patient doesn't talk might not be coincidence).
Now that you mention, this one I have had recently did raise his voice after I did not immediately reflect what he was paternally telling me. I had a mental picture of him being the kind of guy that forces his wife to walk Three steps behind him and not talk.
But would you blame him for not wanting to read a manifesto?
But the rest as I suggested was not bad for you to follow up on, will be natural things for you to bring up to him, the DaT scan (it may reveal even if it is not 100% definitive) and the l-dopa trial and the Unified Parkinson's function survey, which is an elaborate function survey not a blood test, and asking what makes him think that you don't have parkinson's. Unless you think maybe you need to add another 50 pages next time.
Next time ask him to elaborate on what is his thinking regarding "differential" diagnosis, and to explain/discuss his reasoning to you.
But I noticed something in our exchange and in your account of that and of course I could be wrong. You don't seem to like to consider advice really, even when you ask for it. Not that you should if you have already gone down that pathway or thought it through and have moved on from it. You seem to have already thought about it all already. Not that that's bad, but is that possible that if I get that feeling, he might also and so he might just say to himself "well if you're the doctor then you already know what to do so maybe I should just assume that whatever I have to say is subordinate in your eyes." Again, he SAID (if your quote is to be taken literally) that you DON'T have PD.
Or is it really that he's a real moron?
i appreciate the feedback but space and time do not allow me to write EVERYTHING... Of course I gave him a ONE PAGE SUMMARY of my condition with the 200+ page full journal -- etc etc etc... every 'i' was dotted and 't' was crossed in my preparation for this appt... EXCEPT... I didn't expect how INDIFFERENT (emotionally and therapeutically) he was
and i'll remind you of his FULL statement to me: "The good news is that you don't have Parkinson. The bad news is that you don't have Parkinson." !!!!!!!!!!!!!!
WHAT KIND OF DOCTOR SAYS THAT TO A PATIENT???
Can you imagine a doctor saying THIS...
"The good news is that you don't have CANCER. The bad news is that you don't have CANCER."
!!!!!!!!!!!!!!!!!!!!!
did u ask him to clarify that? If I were you I’d be most curious if it’s bad news that I don’t have PD, what do I have? As Marion suggested, get an answer
I unfortunately have a very long medical history (with 17 major) ops not to mention my other conditions. (I’m 75 PD- 6 years +) I always keep info down to 1 page max seeing my MDS or any other doc, which I have many. Your right many docs see many patients in a day, I value their time and attempt to be clear and precise to the best of my ability. When you have not received the clarity you deserve, speak up. If you are sure he is incompetent, get yourself a new MDS. My suggestion. …lastly if your insurance will pay for a Dat, to me that’s a no brainer. Blood tests. I think that’s the first thing to be done. Again, that’s a given. .
thank you very much for your thoughtful and detailed reply.... and my heart goes out to you from the description of your personal situation... i still have not done blood tests or any scans... i don't like doctors... a doctor "killed" my dad with an unnecessary procedure before a routine prostrate operatioin ... doctors/scientists/politicians ... "half-blinded" my sister after she got her covid vax!!! -------------- I wish you the very best and much improved HEALTH!
thanks for the reply and well wishes . All in all I’m presently doing just fine , thank you. Whether you like or dislike doctors is not the issue. You need a professional to interpret your tests. Like everything else, good and bad doctors. You do have your choice. A few months ago I had a deadly bout with covid/after vax. Hospitalized with pneumonia, oxy down to 84. With excellent doctors and drugs I improved quit quickly., otherwise I’d prob be dead That’s my story. My other suggestion is leave your particular prejudices out of your threads. If you don’t want to like or go to doctors /politicians your choice, I personally don’t care. If you are looking for answers my other advice is to be open minded. If you don’t wish to take advantage of technology, again your choice. Your choice again to accept any advice, but by getting on a platform which refuses to accept any tests regarding your well being to me is clearly not in your best interests. I wish you good health but unfortunately I don’t think there is anything I can add to your thread.
we all have our personal prejudices ... which i will include in any of my posts...
oh, he also gave me blood work to complete and offered me a datScan ... but he said the datScan is likely to be inconclusive so I declined that... I also have not done the blood work. My next appt with the MDS is in March and I figure if my symptoms get worse that I'll get the blood work done closer to the next appt
No internal tremor for me. Started with rigidity slowing swimming, then tremor in my right thumb that slowly increased to fingers and right hand. Later, started on left. No meds worked for my tremors; so, finally DBS reduced my tremor. Each individual is different.
Diagnosed 2013 and DBS 2022
thank you for the feedback
For the record, my first recollection of any tremors was in my core/abdomen. I remember describing it to my mom as a "jumping" feeling, and I asked her if that was what her A-Fib felt like. she said no, so I just disregarded it. Of course, Parkinsons was the furthest thing from my mind because I was in my early 40s. This was quite a while before I was diagnosed. Also just for the record, I didnt have any tremors in my extremities until quite a while after I was diagnosed. My initial complaint that led to my diagnosis was a rapid decrease in my handwriting ability followed by rt shoulder rigidity.
thanks for the feedback... follow my other posts about recently discovered treatments... and possible CURES!
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