First of all, thank you for taking time to read this. I realize you are probably not a MD. I have seen MDs for the below described issues and would like to ask *non*-medical professionals with real-world experience.
35m here.
tldr is below but a full read may help in offering the best insight.
In August 2018 I had my tonsils removed. One month after this my soft palate descended in my mouth which seemed to give me sleep-onset hypnic jerks. It was a terrible experience. My doctor prescribed .5mg Etizolam three times daily (I live in Japan where it is legal) to help me get sleep.
I wanted to be careful with the benzo-derivative so I only took one pill daily 30 min before going to bed. Etizolam helped a great deal and although I was careful with it, it was not mentally taxing or worrisome for me.
Mid-November I noticed a tremor in my right pinky when my hand was held out and also a tremor in my left ring and pinky finger.
I tapered the Etizolam and the tremor persisted and spread through my body (lips, tongue, toes). As I was undergoing anxiety I accept that those tremors through my body may simply have just been stress/anxiety.
Shortly after this my soft palate began to miraculously raise up again and the sleep-onset hypnic jerks faded then disappeared by mid-December.
Around this time I visited a neurologist to have my tremors evaluated and he ordered an MRI immediately. No visible problems were evident. He asked me to wait two weeks and see how tremors went.
I waited two weeks and saw him again at which point the tremors had left my body but remained in my hands (although to a lesser degree) while also extending to my wrists and elbows.
He said since the other tremors had gone I should wait and see if this was simply a withdrawal of Etizolam and he asked to see me in March 2019. This was mid-December.
On December 21st I began to have UTI-like symptoms. They were simple at first, a sensation of needing to visit the restroom ever-so-slightly more than usual. I saw a urologist that day and he said my urinalysis was clean.
Dec. 23rd the slight urge persisted so I saw another GP, same result.
Dec 26th visiting family in the States I was now having serious urges to void as soon as 10 minutes after voiding so I saw a urologist. Dx'd prostatitis and gave me a week of antibiotics. I felt better for a day then proceeded to get much, much worse.
Dec 29th on what was supposed to be a surprise family trip to Disney World I had to be taken off the plane in Orlando and taken to a hospital I was in such pain and voiding so frequently. They CT'd and found no severe problems. Possible cystitis and suggested I get a cystoscopy.
Dec 30th I woke up feeling okay but by 10AM I was attached by the hip to a toilet and experiencing pain in my urethra. That night I experienced mind-numbing frequency, urgency and pain. I could not think about anything other than voiding for hours on hours.
Dec 31st, after a voiding around 10AM the symptoms slowly vanished.
I'll leave out details of how I thought I was fine and came down with norovirus two days later putting a cap on the nightmare 'vacation'.
During this time my tremors in my fingers (mostly dominant right hand) seemed to settle as did tremors in my right wrist. There were now periods of the days where I could hold out my hand and pivot my wrists up and down without noticing a cogwheel-like movement in my wrist. Slight tremors in my arms (from elbow to fingertips) persisted when I held my arms above my head or rest my elbows on a table and grasp my hands in front of me.
January 11th, I noticed increasing trips to the bathroom.
January 12th. From 2am - 9am I voided 9 times. Went back to local urologist in Japan, did an ultrasound and despite everything looking 'the right size' he said could indeed be prostatitis and gave me the Japanese equivalent of Cialis. Symptoms began to taper that evening and through the next day. January 14th I felt completely like my old self.
From around January 14th I was also able to hold my fingers straight and sometimes if I hold my fingers out but don't concentrate or try to force them straight, they easily stay straight.
Just the same I visited a specialist for Interstitial Cystitis and he scheduled me for a cystoscopy.
January 17th the urgency came back the morning of the cystoscopy. The cystoscopy looked great I have a healthy-looking bladder.
Slight tremors in fingers and body. Eventually settling in fingers, wrists and arms at elbows.
December:
Sleep-onset hypnic jerks tapered and vanished.
Reduction in tremor throughout body but remaining in fingers, hands, arms. Increasing urgency over ten-day period resulting in, ultimately, severe pain/burning and ***constant*** urge to void that vanished over 12hr window.
January:
Return of urinary urge symptoms but the length of symptoms is greatly reduced while on Cialis equivalent (possible reaction to diet that is kind to bladder) Periods of reduced tremor activity in fingers throughout the day are observed. Improvement in wrist tremor (even during high stress periods) Arm/elbow tremors persist.
QUESTIONS:
I have been through a plethora of Dr. Google searches, and more doctor visits than are listed even in the detailed explanation and two potential answers that keep popping up are PD or MSA which my doctors are dismissing (understandably but simultaneously frustratingly so). Yet reading so many personal accounts online seem to keep pointing me back in that direction.
Does the speed of these symptoms seem to match with PD onset? I realize everyone is a unique case but is a barely three-month window just too unlikely for the speed at which something like PD would act on multiple systems in a patient?
Furthermore, with respect to the jerks, is it heard of in PD for a symptom to appear and then vanish on its own? I was not on any medication that should have 'eliminated' them and it wasn't a matter of 'good day/bad day', they simply vanished. In addition to this my urination frequency urge seems to come and go as well. As for the tremors proper, aside from that initial period where they spread throughout my body and then vanished from all regions except my hands, they certainly haven't vanished, however, I have certainly noticed they seem to be less severe as demonstrated by the fact that I *can* hold my hand straight. Can Parkinson's symptoms be this insidious, appearing and lessening or even disappearing on their own?
I gratefully and humbly appreciate your time and consideration in replying.
First and foremost thank you for your speedy reply.
I appreciate your guidance in this time which (PD or not) is still a very difficult for my family. It sounds like you have had more experience with PD than a person should bear in several lifetimes, even so your openness to disperse advice and discuss it are inspiring.
During my research I've noted cases of YOPD with onset symptoms similar to my own in various cases even though they're not particularly normal(?) with respect to onset in proximity to one another. That is to say, sleep, tremor and voiding frequency appearing so closely together. If I may ask, what in particular does not seem characteristic of PD to you?
Currently my biggest concern is the urination frequency which simply does not seem to want to stay away for very long and is impacting my quality of life. The tremors are simply, at this junction, disturbing. With respect to voiding, yesterday was a so-called 'good day' but I'm noticing a return to voiding every two hours today which is very unlike me from as recently as a month ago.
Usually PD starts small. A tremor in the hand, curling of the toes and generally starts on one side. That is not to say it couldn't come on like gangbusters, but I've never heard of it happening like that. Mine started with an internal tremor in my left leg and worked its way from there. I still present primarily on one side. My first thought was that you had a reaction to the anesthesia from your tonsil surgery. I know tonsillectomy can be very traumatic for adults. Is it possible something happened during the surgery that no one has considered? The urinary frequency seems extreme for PD. And I am unfamiliar with symptoms changing that rapidly without taking PD medications. Other members here will respond, but I think they will concur that it just doesn't read like PD. You can ask your neurologist to order a Datscan which is a specialized brain scan for determining PD.
Thank you for a detailed and invaluable reply. I will respond not to be contrary (two well-versed individuals here have told me it may be something else which I will not ignore) but simply to provide more background information.
I would like to attribute the sleeping jerks to my soft palate movement but I cannot be certain of that. The ENTs in Japan and the ENT I consulted with in the States were equally perplexed but came to the consensus that it wasn't simply 'in my head' despite not understanding the mechanism/cause. If the jerks were related to my soft palate then the presenting symptom would indeed have been the tremor in my pinky but I strongly agree with your observation that (typically) such a symptom in PD would present on one side first.
It may be worth mentioning that in the past month I have felt an internal tremor in my neck/head however I do not seriously consider it a serious symptom (more likely stress-induced) as it can and has vanished for lengths of time unlike the finger/hand/forearms which persist albeit somewhat less noticeable in the fingers.
Re: tonsillectomy
Coming out of the tonsillectomy I presented with full-body shaking on reawakening. As a common symptom it did not bother/unsettle me. You are correct; the overall experience proper was indeed traumatic thanks to the soft palate movement and uvula swelling which *still* have not returned to pre-surgery 'normal' levels. There were also a host of other issues it presented but I have refrained from mentioning them as they've either resolved, become negligible, or have no relation whatsoever. That said, the size/positioning of my soft palate and uvulva may not be 'normal' but they are no longer mentally or physically unsettling and have not been since early December.
I would like to think that the tremors are the result of Etizolam withdrawal taken for the jerks but as I get farther and farther from my last dose (around November 20th) that seems less and less likely, particularly with the spread of tremors from fingers to hand to wrist over the period of a month.
Re: urgency/frequency
At onset It was *indeed* extreme and that's something I have not been able to confirm yet with respect to PD so thank you for mentioning that. The frequency urge persists even now and is quite disturbing, especially without being able to find a reason. I will try in earnest not to think too much about what it *could* mean and instead try to simply deal with it as its own issue for now.
Looking into it, DaTscans are available in Japan so I will definitely mention that to my neurologist when I see him for my checkup in March. If I'm being honest I'd like to see him sooner but I realize rushing this will accomplish next to nothing besides making me appear like an unreliable patient.
You may just be answering the questions of some rando on the Net but to my family that makes you a hero juliegrace. We are very grateful.
I understand how disturbing (possibly terrifying) your symptoms must be. Did the "jerks" occur when you were sleeping? Could it have been severe sleep apnea? Did the soft palate issue affect your bite?
The jerks occurred on the verge of sleep and they were unforgiving.
They happened every time I attempted to sleep, every single night.
Before I could manage to get sleep I experienced upwards of 8 jerks, each of them startling me awake and forcing me to take 20min to an hour for my next attempt. It also made it impossible for me to nap. They did not occur during sleep, only on onset. I also experienced vivid dreams that woke me up in early morning hours. (The untimely vivid dreams would ultimately prove to be due to my poor sleeping hygiene from after the surgery, I still have them but only just before waking up in the morning which is perfectly natural)
I suspected apnea first and my ENT had me do an at-home test before calling for an in-hospital sleep study. The test revealed that (when I was sleeping) I was not experiencing sleep apneas. This is what eventually led me to the discovery of the term 'sleep-onset hypnic jerks'. In my searches PD did come up for sleep disturbances and vivid dreams but I quickly put it out of my mind. Then, two months in, I noticed the tremor. That's when I started to grow concerned about the possibility of PD but it was still just a seed.
Then the jerks went away and life was beautiful again even with the tremors didn't concern me until the void issues hit. Until last week I was concerned it was interstitial cystitis but the cystoscopy eliminated that.
It was yesterday when I looked back on these three major symptoms, considered they might relate to dopamine deficiency and returned to considering the possibility of YOPD but, if the symptoms of PD don't work like this (ie. coming, going, lessening over months on their own or entirely vanishing) then I will start thinking in other directions, still, I'm hard-pressed to think of a reason why tremors and this void frequency/urgency would be hitting me. In particular it seems that my bladder sphincter is sending void signals when even a small amount of fluid enters my bladder but my bladder *can* hold the standard max amt. of fluid. This seemed to match up with classic PD frequency issues, thus my concern. After the initial extreme onset, now it's simply a sensation of needing to void with frequency. I've done so about 6 times today so far and none of them have been 'full' voids.
As far as I know PD symptoms do not lessen and disappear only to return again without treatment of some sort. And even then, they generally get worse. I'm hoping that by tomorrow you will have some more responses.
I disagree about seeming unreliable. This is your health and it needs to be addressed. I know the culture is very different there, but you must be your own advocate. If you read more on this site you will see posts that make it very clear that many medical professionals are not aware of newer developments and are stuck in paradigms to the detriment of their patients. If a sooner appointment can be made, I recommend you do so. Uncertainty is very stressful and will most likely aggravate whatever is wrong with you.
I've taken so much time off of work that it will be difficult to take another morning to go see my neurologist at my hospital but I will be able to see a neurologist at a local clinic. They can't do as much for me there and he saw me once for the tremors but quickly said I should go to the hospital for an MRI since it would be more effective/fast. Didn't even charge me.
For reference, here are my left and right hands from December and now:
I don't have tremor. I am what we are now referring to as non-tremor dominant so I can't offer anything on that. I'll check back in later today and if some of the people I think can offer good information have not commented I will message them.
These do not look like Parkinson's tremors to me, aside from the fact that it is the same on both sides. Parkinson's tremors are not confined to the fingers only but also involve larger muscles that cause the forearm and hand to tremor.
You mentioned you awakened from surgery with your full body shaking. I am wondering if these tremors are a result of neurological damage that occurred during surgery - a bad reaction to the anesthetic or perhaps inadequate oxygenation. With Parkinson's, tremors typically stay the same or get worse. If your tremors are getting better I would vote for the neurological damage theory. If the doctors have already checked for all the major known things that can go wrong with the brain and come up empty I would not worry over much about this mild tremor.
I would focus on remedying the urinary problems, which, as I have expressed in private message, are likely prostatitis symptoms.
Yet again, my gratitude for your advice. I have had a number of individuals here say it does not appear to be PD and therefore while I'd like to stop beating that drum, I would mention that during the two weeks between my initial visit to the neurologist, one of the issues of concern for me was that while tremors throughout my body ceased (I accept that they were probably anxiety/stress) i gained tremors in my hands and forearms as you've described.
It's difficult to describe via text but essentially resting my elbow on a surface and raising my forearm then holding in a postural position will induce tremor as well as raising my arms and holding them behind my head in addition to several other positions. With respect to my hands, sometimes the entire hand vibrates slightly when held postural but, again, this is not always present though more often than not it is.
I will take into account what you've mentioned regarding coming out of the anesthesia. It would appear to be a fairly common reaction but just the same it would behoove me to look into it.
A test that is pretty definitive is whether the tremors are relieved by levodopa medication. If you can get some Sinemet 25/100 CR or other time-release levodopa medication you can try taking it and see if it makes a difference to your tremors.
You do not want to have any levodopa medication active in your body when doing a DAT scan as that would muddy the result. So you should not take any levodopa medication within 24 hours prior to the DAT scan. Otherwise you can try it whenever you like. For most people a response is pretty much immediate – within an hour or so of taking.
Hi there, I have had PD going on 6 years , diagnosed at 49. Mine started with dystonia(freezing of my foot ankle, toes , hand neck) on my left side, and have in the last year having tremors . However, my PD manifested after I had a surgery for a totally hysterectomy because of uterine cancer. Being a runner , I couldn’t walk let alone run. I thought a nerve or something had been damaged in surgery . I went through a lot of tests, scans and finally had a DATScan and there PD was. But , I have had more then one person say that after a trauma to their body , like surgery , their PD manifested. We need some research on PD manifesting after a surgery but in the mean time I agree with the others , see about getting a DATScan . Urinary frequency usually comes a few years in with some of us PD people but there again , we are all different . Take care. Karen
Karen, thank you so much. I will add this information to my notes.
I'm trying to keep my responses professional and largely emotion-free out of respect for everyone who has a PD diagnosis but the one thing that would end me is if my case turned out to be PD and if it was *my decision* to have a surgery that I didn't absolutely positively need that caused it. I cannot stick my head in the sand of course but it would be extremely difficult to come to grips with that. Either way it's good to have that knowledge in advance. I appreciate your advice very much.
Trysmiling , Don’t ever feel that you have to be emotion free with all of us , we understand . We have all had to maneuver our way on how we dealt with the diagnosis . And yours quite well may NOT be PD. I will think those positive thoughts for you but if you do get that diagnosis just know that you are not alone and there are people who truely understand even if words are hard to explain it. 😊 Karen
Do not blame yourself for the downsides of having made that decision. Doctors almost never volunteer the downsides of undergoing a procedure, for that matter taking a medication. We patients end up learning the hard way that we need to be vigilant and proactive in evaluating a suggested treatment.
Im no doctor, but it doesn’t sound at all to me like PD. I understand your anxious, but try and not worry. Keep off google and get on with your life. Good luck!
Thank you so much for enduring my wall of text. I will gladly follow your advice regarding Google. It has educated me which is a certain form of catharsis, but when I see real people (and not simply awful webmd-style pages of vague catch-all symptom lists) presenting with cases similar to mine, it certainly gives me reason for pause. Especially when each successive medical examination I'm put through (urinalysis up to wazoo, ultrasounds, CT, DREs, MRI, cystoscopy w/ hydrodistention, etc.) continue to turn up nothing despite having had three very tangible problems.
So I will stay away from Google! But, it is quite a trying time I as I try to deal with these disturbing symptoms. I will also (try) to take your advice to stay away from considering YOPD however, may I please ask why it doesn't sound that way?
Despite how it may look, I'm trying not to be anxious. I'm trying to take this very calmly -that's just naturally who I am- however, the barrage of vague symptoms for almost 6 months now is starting to take its toll on me which, more than anything, I feel will eventually affect my superhero wife who's been amazing through everything. Last night she broke down in tears begging my symptoms to go away and I wanted to fall to pieces but that was my turn to be a pillar for her.
Parkinson’s is a resting tremor beginning on one side. Frequent urgent urges to urinate are common for Parkinson’s. No need to panic even if you received a Parkinson diagnosis. People all over the world are living productive, enjoyable lives after getting a Parkinson’s diagnosis, even twenty plus years. It’s not unusual to notice Parkinson’s symptoms immediately after a surgery. No direct causal connection surmised. Good luck and best wishes.
I've read that while PD usually presents (at onset) on one side, it may do so on both. My tremors presented on both sides, does that leave room for consideration of ET? In essence, would I have to have a fairly unique presentation of PD for it to be on both sides?
Regarding frequent urination, would it present so violently and then clear up like magic (off medication outside of antibiotics) only to reappear in small spurts? While I'm on bladder relaxing medication, I'm not on a particular medication traditionally used for PD and I'm seeing the symptoms come and go. Not to mention they're increasingly less severe than before.
While I'm asking away I would also like to question whether or not symptoms improve (regularly) for PD in the morning. I ask because almost every morning before heading to work, my typically tremoring fingers -except for left index- are solid even when not trying to force them straight. Is such a concept as 'routinely better after sleep' known to occur with any form of regularity in PD?
P.S. Juliegrace, I recieved two DMs, if that's your work, thank you again.
I agree with you, Ms. Grace is a hero and I agree with her, in that I've never heard of PD, as the only illness involved, going from minor twitch to a major problem in a matter of months and then completely vanishing only to return, but I wouldn't put anything past PD.
I don't think at the point when the symptoms 1st show up, PD is moving that fast do that much damage. Urinary urgency of once every 45 minutes is more like a person whose had PD for years.
On the other hand, as you and Julie recognize, a lot of what you describe doesn't sound like PD, but some of it does and just because PD did not cause the urinary frequency, for example, doesn't mean you don't have PD. PD may be causing your fingers to twitch and some other illnesses may be causing the other symptoms. The trauma of the surgery may have triggered a few conditions, PD being 1 of them.
Perhaps the only way you're going to know for sure is to see what happens over the next year. If it's PD, and you caught it this early and you are clearly diligent about learning as much as you can, you have a good chance of keeping it under control.
What else have you found that causes your level of urinary urgency?
A DATscan may tell you something.
The antibiotic may have been strong enough to get the upper hand for a day, but not as strong as it should've been or the wrong antibiotic because the infection then came back.
It looks like stress is a factor for you. Join the club.
I would want to see the hospital's records. If something went wrong, there would be a record of procedures they used to correct the problem. The records may tell you something.
3 years ago, my brother had his appendix out unexpectedly and afterwards a nurse confided that she thought the doctor botched the job. (Serious acrimony ensued.) His blood sugar went to 220 the following day and he was rushed to an emergency room via ambulance and was told he was within an hour of dying. He was not diabetic or pre-diabetic. Doctors never did figure out how or why it happened, except they do believe it was triggered by a botched surgery.
Maybe go to Parkinson's support group for their Dx.?
We hope you don't have it, but we also hope you don't have something worse.
Your detailed and personal reply are very much appreciated.
Yes, most of what I've read from first-hand experiences suggest that urinary urgency/frequency issues tend to show up later on. I've also found rare instances here and there of non-motor issues such as I've described popping up early in the disease for patients but it seems to be a very rare presentation.
And yes, the urge to void was simply unbearable. Not so much every 45 minutes as it was every time I finished voiding...even though there wasn't anything there... This eventually gave me a burning sensation in my urethra before it magically cleared up on New Year's Eve and vanished until Jan 11th where it's been yo-yoing on and off. While on meds, yesterday I had an urge every 2 hours and today I'm...every three? Four? That's still way up from my usual 2-3 times a day.
At this point, the only thing scarier I've seen is MSA which, I *really* don't think it could be due to the rarity but other than that, most things have basically been ruled out.
My urologist who performed the cystoscopy (and has been excellent) suggested that a hemorrhoid I had cut out a day before the UTI-like urges began in December may have left the area sensitive and my bladder is overacting to acidic or spicy foods. I'm willing to accept that but...I know my body and I'm not usually *that* sensitive. Also, I don't know why those symptoms would be lasting (as of today actually) a full month.
I apologize, some of this is probably irrelevant.
While I have not found 'triggers' for the urgency/frequency, I am currently eating foods that should be kind to my bladder. What's been bothersome for three days now is that albeit taking two medications to relieve symptoms in the area and eating bladder-friendly foods, I'm still feeling that pull every 1-2 hours, particularly after drinking something.
I am so sorry for what happened to your brother. I would like to trust the team that handled my surgery but I'm also concerned that my own anxiety/stress over the soft palate and uvula issue may have made me damage myself.
I'm a little wary regarding prostatitis as a cause simply because I've had a few DREs over the past month and none of them have been painful. Not comfortable mind you, but never painful.
So as it stands my urologist is considering that my bladder might be sensitive which I'd be happy to accept if urgency, tremors and sleeping issues weren't all issues potentially linked to dopamine deficiency.
All of that said, including DMs, more than 6 voices of experience have now told me that it doesn't seem like a typical PD. Having done a small bit of research, boy are you ever on the mark that I certainly can't put anything past PD, but I'm willing to continue trying to consider the cause is something else and possibly even the product of my own stress/anxiety exacerbating a benign tremor or fight/flight void urge.
I've made the decision to take yet another day off from work and to see my neurologist Monday morning, calmly present the new information regarding my urgency/frequency issues and state my interest in looking into the possibility of a DaTscan. Thank you again!
You said your voiding symptoms are in the process of diminishing. If we accept that you do not have prostatitis or any other condition that requires immediate attention, the most sensible course may be to simply apply "tincture of time" - continue taking your bladder relaxing medication and otherwise simply observe.
It is unlikely you have Parkinson's since your tremors seem to be diminishing over time. If you do, watching and waiting for a month or two will do no harm.
Hello PB, great to hear from you. Latest developments below.
Just as an aside, the tremors seem like they're improving then...suddenly they're not. Or I'm relaxed and they seem to be fine but suddenly I take a shower or some equally mundane task and they act as if I just lifted weights. I would love to think that they're improving 'overall' but I'm not sure if that's wishful thinking on my part. It seems every time I'm feeling positive about the progress, they pop up when I'm not even thinking about them. Particularly the feelings in my forearms. I'll rest my elbows on a table suddenly feel them when I didn't expect to feel anything.
Hello and thank you for checking in on my case.
I saw my neurologist and he said that at this point it does not look like a case of PD yet even though that may not be ruled out, however, with the tremors going on this long it may be Essential Tremor.
He prescribed me 15 days of .5mg Klonopin once nightly.
I am a little skittish about this because I was on Etizolam (legal prescription med in Japan) when I first noticed these tremors.
At this point I should find a great source of comfort that not only have the informed and caring individuals here said it does not resemble classic PD but also my neurologist. However, I'm still feeling quite uncertain, perhaps mainly because a medicine as strong as Klonopin is a bit unwavering. I am also concerned that if the drug is effective, what that will mean for me long-term.
These concerns of mine don't relate directly to PD so I shouldn't bring them up here but if anyone has had any experience with the drug along their path to diagnosis of PD and has any advice of what I should/shouldn't expect, it would be very helpful.
As always, thank you for your time and consideration.
I think you are wise to be skeptical of the Klonopin. Benzos are hard to get off of if you take them regularly. Personally I would only take that kind of medication occasionally when clearly needed.
You are understandably concerned about the tremors. Setting that aside, what is the actual impact on your quality of life?
At this point there is no actual disturbance in terms of functionality besides feeling shaky when I raise my arms in a certain position. It's mostly disturbing mentally. I try to put all of this out of my head, and simply rest my elbows on a table when my hands and forearms start (finely) shaking reminding me of everything.
Since you have had an MRI and other forms of medical workup that excluded any dire condition that needs attention, just accept the occasional tremor is the way things are right now and rest easy in the knowledge nothing bad is going to happen.
As usual this is great advice park_bear. I will try to do that over the course of the next few weeks. Unfortunately I'm also dealing with the voiding issue which makes this a big vicious circle.
Waiting and watching the symptoms to see how they clarify is not satisfying because it feels like you're not being proactive, but it might be good to consider because otherwise you are now left experimenting with some potent/exotic pharmaceuticals for a condition you can't (yet) identify.
I'm not sure if there's anything lost in this approach because the drugs you're experimenting with are not going to be curative anyway.
Yes, it's true that I am not entirely thrilled about the two weeks of Klonopin. My solace is that I have research the medication thoroughly and discussed my desires/goals with my doctor, family and friends. They are aware of what I am doing and what I have done to look into it. I would mention that I have not requested this specific medication but my doctor suggested it.
His reasoning was such that an essential tremor case should respond to this medication so if I see results that would almost definitively rule out PD *at least* as a single presenting malady. That is to say, PD could well be there somewhere, possibly affecting the voiding issue, but the tremors would not be a result of it if they respond to the Klonopin.
On the other hand, if the tremors do not respond to the Klonopin, what does that leave me with? That's a bit unnerving.
At any rate, one thing I'm certain of is that after these two weeks, should the medication prove to be effective for the tremors, I am not interested in continuing with this particular medication. I've seen the spectrum of meds available for ET and if I am to take anything long-term I would prefer something other than Klonopin.
Above, where you explain that after voiding, you feel that it wasn't complete, but "there's nothing there." How do you know there's nothing there? I think it's often the case that when people feel they're not empty, is because they're not empty.
Yes, you're right about that description. Unfortunately to keep things truncated, I left out many (many) details one of which is that since then, the voiding followed by immediate urgency has since subsided. I have checked with three urologists via ultrasound to see whether or not my bladder is voiding properly and everything turned out well. Disturbingly so. It's that point in the journey where everything looks *so good* that the question of, "Well, if everything's working....then...what's wrong??", and sometimes the answer to that question is not a pleasant one.
So for a little more detail as to my current state. I am voiding properly and painlessly. However, 45min-1hour after doing so I feel a slight need to void. By this point I can only attribute this to a small amount of fluid filling the bladder and sending an overactive signal saying, "Hey dummy, you gotta get rid of this." despite having very little actual fluid compared to max capacity.
During the cystoscopy my max capacity was tested and fortunately/unfortunately it was fabulous. So I absolutely can hold more fluid in the bladder for the bladder sphincter seems to be sending a mixed message, or perhaps the right message that is being misinterpreted elsewhere.
This has better and worse periods throughout the day.
Sometimes I'll get a slight urge to urinate but hold it back for an hour or so. If I do that, sometimes I'll be good to go for 4-5 hours on end, like normal. However, I would say that for the reduced volume of fluid I'm taking in, even that span is a bit short for me.
That's where I currently am. I'm voiding properly. I will get an urge to void without a full bladder. Sometimes I can reduce the urge if I wait for an hour at which point it may subside for a few hours.
It is unfortunately mentally taxing and putting me in a vicious circle with the tremors.
I first noticed the tremors while taking Etizolam (legally prescribed in Japan) .5 mg x3 daily. This seemed like way too much so I only took one before bed nightly. The period which I took it was late September- early October at which point I tapered then stayed off for a week but had to take more when the hypnic jerking began to worsen again. From late October - mid November I took the medication again with a taper starting Mid-November. The amount seemed way too much so I never took more than 1 before sleep.
My last dose was November 21st. I noticed the tremor a few days before that.
On the first visit to my neurologist roughly a week later he agreed that it might be related to Etizolam withdrawal so we agreed to wait two weeks and see. During this time the tremor vanished from most of my body (probably due to stress and anxiety) but the finger tremors remained and it was joined by hand and forearm tremors in specific poses or forms, sometimes at rest.
Two weeks later he said that the sign that tremors throughout my body had dissipated was good and that he wouldn't suggest further medication with which I agreed.
And here I am today.
Still have them in fingers, hands and forearms.
Most days now I can notice periods of time where the tremor seems to be gone from one finger, or one hand seems to be stable but that can change with a little activity. (and sometimes it doesn't) My forearms though seem to be fairly consistent. Overall they *seem* to be better but at this point that might be wishful thinking on my part.
Bendzoids are extremely difficult to get off of. I believe they are one of the drugs that can cause Pd like symptoms . It seems like you were on them for a short period of time which is good. They are very difficult to get off of and your symptoms can be worse initially when you stop. Since you were on them for only a few weeks I’m not sure that there would be any real side effects going off them. Do you take anything else for anxiety?
Bendzoids are extremely difficult to get off of. I believe they are one of the drugs that can cause Pd like symptoms . It seems like you were on them for a short period of time which is good. They are very difficult to get off of and your symptoms can be worse initially when you stop. Since you were on them for only a few weeks I’m not sure that there would be any real side effects going off them. Do you take anything else for anxiety?
Yes, I didn't want to depend on the Etizolam or see it as a 'fix' for the hypnic jerks. Luckily I didn't and it wasn't.
My thoughts as well. Given the short time and the ever-increasing length of time between present and my last dose, I find it hard to believe there's a link.
Most of us on this site do you suffer from anxiety. It sounds to me like you do as well. There are many other medications not benzoids that can be helpful. Talk to your doctor to see if there’s a good one that they would recommend. Also involve yourself in other activities you enjoy like reading, gardening whatever it might be to keep your mind busy and attempt to stop thinking About your symptoms 24 hours a day. It’s easy to become consumed with our physical well-being. But it seems to only worsen things when that’s all we think about. Listen to your doctor and don’t research too much on your own. Or at least take a break from it. Make sure you’re exercising which is a great stress reliever and will help you sleep. Also make sure you’re eating well Since food is medicine. I hope you start feeling better soon, keep us posted! Connie
Hello everyone.
Thank you for checking in again.
Having taken my first dose of Klonopin last night, today was a scary day. The medication does indeed make one very sleepy for a good 2 hours in the morning which ended in a good 30 minutes of feeling quite blue. Wretched stuff.
Feeling uncertain about the regimen and wondering what my urologist would have to say regarding the YOPD concerns, I bit the bullet, took even more time off of work and went to see him.
And I'm glad I did.
I'd like to share this information with the group so that it might help others in the future who find themselves (however unlikely) in a similar situation as myself.
The urologist was very kind and accepting of my concerns. When I finished voicing them, with my wife as support, he explained that one of the tests during the cystoscopy, the hydrodistention, was in fact a test with multiple purposes, one of which was ***eliminating the possibility of nerve damage***. He explained that my bladder was able to fully expand to hold saline and in the case of PD or MSA, the root of urinary urgency/frequency would not allow me to control my bladder the way I did. In other words, I would have voided automatically without any control over the circumstances. This ruled out neurological or nerve-related damage. While he cannot say what caused the most severe issues at the end of last year, he is fairly certain that whatever they were, they left their mark on my bladder for the time being. When the bladder slightly feels that fluid has entered, the brain panics remembering what happened before and tries to get rid of it. He believes that I will eventually 'retrain' myself from this condition over time and that focusing my attention elsewhere when the brain thinks it should be voiding is very important. This is particularly difficult when I'm walking which he agreed it would be since I'm bouncing the bladder up and down which makes it panic.
This reduces any concerns of mine related to PD to the tremors and as all of you have been keen to notice, the tremors presenting on both sides is unusual and they do not resemble typical Parkinson's tremors.
It looks like I may be facing an essential tremor diagnosis so I will be looking for a community where I can discuss that without derailing any topics or detract from the main point of discussion.
However, if you don't mind, I would like to keep in touch with the members of this forum who have lovingly educated & comforted us by updating you on the progress of my journey through what happens next.
Juliegrace in particular, thank you for bringing all of these wonderful people to my thread and for being an absolute rock, I said it before but you are a real hero.
When I figure out what's going on with me I will let everyone know who helped us through this along the way.
Thank you all and bless your hearts. You're legends, all of you.
You are most welcome. I am very glad to have been helpful. Please keep in touch. I hope whatever the root cause of your issues turns out to be that it is not serious.
I just read your posts and watched the videos. A couple of things come to mind. First, there have been posts previously on this forum that discussed dogs that are able to smell PD when exposed to the patients clothing. Is this a possibility for you to further eliminate the possibility of PD?
My second thought is that many of the symptoms you have mentioned can be seen in Fibromyalgia Syndrome (FMS). Your leg jerks sound very similar to restless leg syndrome (RLS) and RLS is very common in Fibromyalgia as are muscle jerks in the body. :
I am kind of doubtful that you have PD based on what you have described, but I can see that many of your symptoms could fall under the umbrella of FMS known symptoms. You can do a little reading on the symptoms of FMS to see if you have any other symptoms that you may not have mentioned or thought of to try and eliminate FMS as one possibility. Making a complete numbered list of every symptom you can think of and letting your doctor review it may help narrow things down also.
Art
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Thank you for the *extremely* detailed reply Art.
I've added all of this information to my research notes and I will update you and the team here if/when I make any headway.
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If it is FMS, some of your symptoms may be responsive to magnesium chloride oil (mag oil). Mag oil is also useful for PD as some members have reported. Here is a study suggesting that magnesium chloride oil may be helpful in people with FMS:
Hello everyone. I wanted to give you an update on my status.
In the month since my last post I was prescribed Klonopin for the tremors which did *not* go well. I ended the regimen with more severe tremors and my neurologist put me on a Japanese alpha/beta-blocker, Arotinolol. Since then the severity of the tremors decreased but I am not able to distinguish whether or not they are less than previously being off medication. For the time being the tremors are within a reasonable level of containment and I'm interested to see how they appear off of medication so that I might compare/contrast the efficacy.
I have not noticed a strength decline -via a grip test- which takes some of the more crippling conditions off the table.
My voiding urgency/frequency issues, however, continue to be a major problem. It looks very much like a case of IC without clear bladder pain/lesions. I still remain hopeful that, that is not the case but having experienced these symptoms for two months now is mind-numbing. There's also a pain component in my urethra that comes and goes (with increasingly alarming frequency) which gives me reason to believe it's not a PD case as a pain component does not seem to come up for PD cases.
All in all it does not look like a case of PD but I still have tremors to deal with and the horrible frequency/urgency issues which I'm looking elsewhere for help with.
I will update everyone again if I make any headway or get a diagnosis so that I keep everyone who showed so much kindness to me in the loop as well as to help anyone who may read this thread in the future.
Thank you for the update. I was wondering if you had found any answers.
Hello everyone. I hope you're well or as well as possible. I'm here with an update on my condition as well as questions for the community.
My tremors have progressed and I'm now feeling an internal tremor in my neck/head region. It's difficult to pinpoint the location exactly but my head does seem to have a slight tremor that is pretty much only recognized by me but it's too fine/slow to be recognized by others. This tremor may be felt when I rest my head while sitting on our sofa and it may also be felt when I put my head on my pillow at night. I can hear my ear ever so slightly moving against the pillow cover material. This is not 'normal' for me, it's not my pulse (I've felt that before) and it's not a case of 'looking for' a symptom. I've experienced similar tremors at the start of this entire ordeal but I completely recognized them as anxiety/stress-related and they went away after about a week. These have been around for two weeks now and I'm nowhere near the level of stress/anxiety I was back then.
I also have a tremor of the jaw/lip that may be seen upon close inspection and felt upon trying to bite lightly.
My legs also feel unsteady when I'm standing stationary. I feel that I have to lock my knees to stand still. Unlike the above tremors this *may* be looking for a symptom since I can't be sure if I'm overthinking it.
The bladder issues persist but thanks to Toviaz medication the urgency is slightly more bearable and I'm not experiencing any more urethral pain (knock on wood).
On top of it all I'm losing muscle in my elbows, triceps and behind my thighs on both sides of my body. This doesn't fit ET or PD at all and could be that I haven't been eating enough protein because of the bladder issues nor have I been working out *but* I've never seen my body lose muscle this way, it's fast and disturbing. I'm also feeling weak when going down stairs but I don't know whether that's the unsteadiness in my legs or muscle loss.
I think it's important that I mention a little under two weeks ago I had my regular neurologist and a second neurologist (for a second opinion) perform basic strength/coordination/reflex/sensation tests on me. Both doctors admitted there was some muscle loss but I passed all tests except for steady hands which they both agreed looked like ET.
If you have any advice/commentary I'd love to hear it. I'm going for a neck MRI on Tuesday. I've voiced these concerns to my neurologist and he's starting to worry me because he's suggested that it might not be a 'sickness issue' which I'm very concerned he means it's 'mental' and is starting to dismiss me.
QUESTIONS:
Regarding the head/neck tremor, in a typical case of PD, may a head/neck tremor typically start strong or does it begin like a slight internal tremor like mine seems to be at this time? I'm concerned about the speed of onset here which (to me) seems so fast over a period of 4 months.
Besides my perceived weakness with descending stairs, I'm not noticing any weakness. However, when I strain/flex an appendage, it tends to quiver like it's under fatigue. That wouldn't be PD, correct?
I'm sorry for the word dump. I'm so tired of one thing hitting after another and it doesn't help that the symptoms are all over the map. The fact that the head/neck/lip/jaw tremors occur when I'm at rest has me wondering if this is a double-attack of ET & PD if not something more insidious.
I'll add that despite muscle loss, even I find it hard to consider ALS because of the lack of weakness. My grip strength is actually improving so I'm a bit relieved by that. I consulted with a college buddy who is a neurologist and he doesn't think it's MSA because of the pain associated with bladder issues which is not something found in MSA patients.
Glad to see an update from you. Not glad that you still have no resolution. Four months seems too rapid for muscle loss as you have described to occur as a result of not working out unless you were working out to an extreme. My PD is non-tremor dominant; hopefully some tremor-dominant members will weigh in. Have you checked with some of the other forums? I truly wish I could be more helpful.
I've looked for some SMA Type 4 forums and such but they're either poorly attended or deal largely with the birth/childhood-onset.
Had my spinal MRI today and the result is....nothing...again.
Doc doesn't want to run any more tests and asked to see me again in three months with him being open to seeing me any time if there's a drastic change.
I'm so sad for you. I feel that not knowing is worse than anything. Is there another doctor you can see or a medical center that specializes in neurological issues?
I apologize for the late reply. Been a bit rough with my bladder urgency as well.
So I looked for a third opinion with another neurologist and he was unwilling to say anything after one examination (perfectly normal) and he wants to see me again on April 20th so I'll see him then and at that time he'll decide if an EMG is necessary or not. That makes me feel a bit better than waiting all the way to June.
Hello everyone. I hope you're well or as well as possible.
I'm posting with an update to my situation.
Just as of last week, the jaw and neck tremor dissipated over a period of five days.
Now the neck tremor is gone and the jaw tremor is very subtle.
Around the same time I noticed a pronounced reduction in my hand tremors but they're still visible.
I am still suffering from the bladder urgency. I will post again after my next urologist visit.
Hello everyone. I hope you're well or as well as possible.
Just checking in and this may be my last update unless something changes dramatically.
Unless there's a major turn in the next few years, it seems that Parkinson's is off the table.
The tremors returned again and as I type this they're tapering off again. Does not seem consistent with Parkinson's and essential tremor seems a more likely candidate but I'm really not sure if ET comes in such large waxing and waning phases. I'm almost a year out from their initial onset and during that time I've seen them progress to jelly-legs, retract to almost nothing, come back (but never as violent as their worst in the initial wave), and now waning again. Not sure what's going on, neither do my doctors.
The urinary issue persists and is absolutely dreadful to live with. I overcame so many complications since August of last year but it seems this one has decided to stay around and make my life very challenging. CPPS, Prostatitis, Interstitial Cystitis, etc. etc. Nobody knows and very little seems to help. Regardless, my wife and I are forging ahead.
While those issues may persist, my initial concerns have been addressed and I hope they may help someone with similar concerns in the future. While I still cannot say whether this is ET for certain, all signs point to it being something other than Parkinson's.
Thank you all -especially juliegrace for extending a hand so early on- and regardless of the status of my condition, I'd still like to drop in and see everyone.
You obviously have a strong support system which is really key when dealing with a chronic illness. I wish you all the best and hope that you find some long-term relief. Please let us know if you get a clear diagnosis whatever it may be.
Thank you julie. So many people vanish after finding relief or getting an 'answer' and I didn't want to leave this without some form of closure. All the best to you. I will be back to check in on everyone but I think this is where I should leave this particular thread.
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