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nixd02

Embarrassing night time question from a newbie

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nixd02    4

Hi. My name is Delise. I'm new to the forum, so before I actually ask my question I'll give you a bit (a lot) of background on me. I was diagnosed several months ago. After years of on going problems ; fatigue, severe cognitive issues, short term memory loss, left hand resting tremor, the feeling of concrete in my legs (many other issues but since my brain can't remember everything I'd have to look at our notes). Literally going from someone who was in top physical strength running 5+ miles, exercising and a Director of Marketing for a medical device company to barely able to walk without a cane. When all blood work, labs, MRI's all come back fine I started getting labeled with everything under the sun, stress, anxiety, somatization (psychological distress in physical symptoms), CFS, fibromyalgia, ME, depression, on and on. And going from Dr. to Dr. to get some sort of diagnosis. My family history with PD runs deep. My mother first was diagnosed with PD then with MSA (she only lived about 4 years after her diagnosis of MSA), both her parents had PD (died from other causes) and my maternal great grandmother also had PD (again, she died of other causes). My GP was no help, so when he got fired for peddling pain killers a new Dr. came on. A DO (Dr. of Osteopath) this was last year and for the first time I had a Dr. who listened and examined me. He said "I think it's MS or PD, so since you haven't had a spinal tap, lets get that and see." At this point in my life, I honesty didn't care what I had. I knew my body was sick, but with what? The spinal tap came back negative and honestly, I felt sad, defeated again (I know that sounds insane and stupid but I'd never been this "sick" hell, I never ever felt tired much less fatigued). When I returned to his office he said "let's try something, the meds for PD. If they work, we pretty much have our answer." I took them (first month I was so nauseated), but take the nausea away, the issues were going away. After the first month the nausea went away and I was walking almost normal, tremor no more, fatigue better, speaking (I paused a lot, said um, wrong words for things and I use to speak fluent with ease in front of hundreds of people), I was 75-80% back to normal. Went to 3 month follow up with DO and he and his nurse were astonished at my improvement and couldn't believe it as they had never seen me "well" he said it's PD no doubt. Let's get you to movement disorder Dr for diagnosis. Well, I waited 5 months to see her and in the mean time I was feeling great. Came time for appt. nurse called and said "be off your meds 24/48 hrs so she can test you first off and give you your meds and retest you." This is the same hospital that I'd seen neurologist, rheumatologist, infectiousness disease Dr's on and on. She came in sat at the computer and for the first 10 mins read the notes on me from other DR's (as I could barely sleep the last two nights crying with pain, legs stiff and like restless, tremors, slowness and pausing of movement, balance trouble on and on,), she asked questions, and did the physical tests. She didn't ask me to take my med to retest me. These were pretty much her words "You don't have PD, you have a parkinsonism disease (my husband interrupted her and asked the name, her answer) I don't know. I can tell you your too young for PD (at the time I was 46) and your tremor is not like Michael J. Fox's (she seriously said that, FYI my DO later named my tremor pill rolling, I personally never heard of it pill rolling) she continued to say "with your family history you are very highly susceptible to getting PD. You could get it next month but you don't have it today." That was it, with the help of my husband I made it to our vehicle, took the med and the symptom's got less and less until "poof" felt physically normal but again defeated by another "Dr." I did a follow up with my DO a month or so later, she hadn't sent him anything. Still he's yet to get any report from the movement Dr. May of this year I had to have my yearly physical and my DO asked me to come in a week or so early to get typical blood work done so he'd have the results at my physical. He asked me "don't take your meds 24 or hours before you come back for your physical". I said Ok. I could again barely walk. Stooped over, shuffling, tremor on and on. He tested me (same tests the movement Dr did). Take meds and said "while I'm giving you your physical we'll let them " kick in". As he's doing the ear checking, heart etc. I'm unaware (until he told me at the end) he's watching my tremor slowly go away, my speech is more together and my voice now even was tremoring off the med. About 45 mins later he retests me and everything is like "normal" the 75-80% of normal. My "new" normal. His words were "this is bullshit, I'm diagnosing you with PD, I don't care if I'm not an " official movement disorder Dr". He actually use to be a anesthesiologist Dr but has a hereditary movement tremor and went back to school. Anyways, I know this was crazy long (so sorry, I ramble, even in typing) and I still yet have gotten to my question. I've noticed the past month (seems to be getting more frequent) at night I'm dreaming I'm sitting on the toilet or sometimes maybe I do dream and can't remember the dream or I don't dream, not sure (I pee ALL the time and never use to and I get up many times at night and since getting "sick" and also have horrible constipation) and I'll wet myself. Sometimes the warm feeling will wake me, so I haven't wet the bed like full on like a child but my sheets have gotten damp, have to clean myself and change. Has this happened to anyone else? Again, sorry for the long introduction to a simple question.

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wilsons66604    35

I can relate to your trouble getting a diagnosis. No one believed I had PD until they saw my DaT Scan.

 

Haven't wet the bed yet but I have had a dream where I was peeing...I luckily woke up and realized that that was not normal ...I should get out of bed!!

Over the past couple of months, I have learned that urination frequency may increase in People With Parkinson's 

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MurrayPD2    219

I can relate to your trouble getting a diagnosis. No one believed I had PD until they saw my DaT Scan.

 

Haven't wet the bed yet but I have had a dream where I was peeing...I luckily woke up and realized that that was not normal ...I should get out of bed!!

Over the past couple of months, I have learned that urination frequency may increase in People With Parkinson's 

It certainly has for me.  Thankfully, there is a medication that helps that.

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PatriotM    797

Nixd,

 

Welcome to the forum.

 

Frequent/urgent urination is a symptom of PD. I have not had bed-wetting, but until a couple of months ago, I would have to get up every couple of hours to pee. I also had frequent/urgent urination during the day. About 2 months ago, I started using medical marijuana for my tremor, which completely solved the frequent/urgent urination problem. If you don't want to take medical marijuana, I'm sure that a urologist would have some traditional medicine that would help.

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Beau's Mom    1,047

Welcome, nixd02. I believe you are in the right place. I had urinary problems at least five years prior to diagnosis of PD. Daytime and nighttime.I had constipation 20 years prior to diagnosis. Tremor, handwriting smaller,balance problems for several years. My daughter Googled my symptoms in 2010 without my knowledge and suggested I see a neurologist.  Two months later I had a diagnosis. I knew nothing of PD prior to 2010. I did hear that Michael J. Fox had it, but I didn't watch his show so that meant nothing to me.

 

Keep coming back. We will share our experience, strength, and hope (yes, there is hope) with you.

 

Dianne

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Feisty Folder    162

Nixd-

You've had quite the journey! I'm sorry you had to find us but am glad you are here.

As for bed wetting I haven't experienced it as part of my PD, but I did struggle with it for several years due to another neurological condition. In that case I was still trying to live my life as I had pre-health issues and as a result at the end of the day I was so exhausted I wouldn't wake up, leading to bed wetting. I haven't wet the bed once in the 6 years since I dropped out of university. Now, due to PD, I have the opposite issue, but that's a different story...

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christie    1,049

Nixd02 welcome to our forum!

 

First, an osteopath is not qualified to make a diagnosis of YOPD. And I would trust more the words of a Movement Disorder Specialist -even one with poor bedside manners- than those of a non-neurologist MD.

 

So, the way I see it, you remain undiagnosed, and you should definitely seek the opinion of another MDS. Why?

 

1)Both your clinical history AND your symptoms suggest the presence of genetic parkinsonism, and not idiopathic PD (although from a clinical and therapeutic point of view the distinction is not that significant).

 

Problem 1 is that patients with genetic parkinsonism often have an atypical presentation and signs, and their diagnosis is much more challenging that in patients with typical idiopathic PD...A second opinion from an experienced MDS  might resolve this uncertainty. A datscan might also help. If positive it will confirm, beyond any reasonable doubt, the presence of degenerative parkinsonism (most likely genetic parkinsonism, in your case...).

 

Problem 2 is that your positive family history also increases the possibility of a stress-induced disorder. Did the MDS clarify whether your symptoms seem to be of organic or psychosomatic nature? The term "parkinsonism" on its own, doesn't mean much. On the other hand, if she thought you had genetic parkinsonism, she would definitely suggest the continuation of levodopa treatment and -ideally- genetic testing. So, that's very confusing...

 

2)Any neurologist -or doctor for that matter- who thinks that a 46 year old is too young to have PD should re-take his/her residency exams!! I suspect that the neurologist doesn't truly believe her story. I also suspect she didn't find conclusive signs of Parkinson's, mainly bradykinesia, which is a prerequisite for the diagnosis of PD -at any age!  So, she probably  threw the too-young-to-have-PD-nonsense just to calm your fears. No wonder she failed. In the internet era, you don't need  a MD to google "young onset PD" and read that ANY patient, even adolescents, may develop PD. (Note: that doesn't mean you should trust the Google doctor. I only want to point out that medical knowledge is no longer a confined privilege of those with a MD, but widely available to anyone-its interpretation of course is a whole different story...).

 

3)The wetting the bed symptom sounds too advanced for a patient with such mild motor symptoms as in your case...

 

4)You can ramble all you like...We all do from time to time...

 

In brief, get a second opinion! From a MDS.

 

And keep  us posted...

 

Christie

Edited by christie
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miracleseeker    668

As long as you are given the meds you need to function again then you are doing better.  Like you said call you what you want as long as you seem to be on the right drugs then I would be happy with that.  My mom has full blown incontinence but that's only after about 6 years from diagnosis.  Women tend to have leakage as we age and you may be going through menopause and that can make it happen more so.  I've had dreams lots of times that I need to go but I'm always around portable toilets in construction sites so I hold it in until I wake up and I then run to the bathroom.  I suppose my body is telling me to go but I hold it in cause I know I will wet the bed if I don't and having that kind of dream make me hold it in cause those portable toilets are disgustingly dirty and I would never sit on them in real life.  Ok I'm now rambling. :-P

 

If I were you I would get some pull ups and wear them at nights then you won't have to worry about it.  Taking another med for that will just give you side effects for something else. 

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Discovery    378

Wilson66604,

 

Your pic looks like a Pet Scan....is that your Pet Scan? I'm courius....it looks like the comma is missing on the left side.

 

Excuse me I just read your signature....it is yours.

 

D

Edited by Discovery

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Peace    160

I'm leaning towards thinking this falls under the classic PD symptom of acting out dreams.  Do you move and talk during other dreams?

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wilsons66604    35

Wilson66604,

 

Your pic looks like a Pet Scan....is that your Pet Scan? I'm courius....it looks like the comma is missing on the left side.

 

Excuse me I just read your signature....it is yours.

 

D

Yeah. That's mine.

The day of the scan I came home with the disk of images. While I hadn't gotten the results yet, I read the images myself. Imagine my surprise/disbelief when I saw these. I couldn't believe I was that far along.

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Discovery    378

I have my disk too...my left comma is not full as the right but not too bad....it's shocking isn't it to see how far along we are!! Yikes:(

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MurrayPD2    219

 

I have my disk too...my left comma is not full as the right but not too bad....it's shocking isn't it to see how far along we are!! Yikes:(

 

 

Yeah. That's mine.
The day of the scan I came home with the disk of images. While I hadn't gotten the results yet, I read the images myself. Imagine my surprise/disbelief when I saw these. I couldn't believe I was that far along.

I am trying not to distract the original topic, but I wanted to respond. I have no "commas' on either side on my DatScan, but the "circles" that are left has my right brain diminished significantly more than my left.  It was concerning, but relieving to know I wasn't untreatable.

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BillBRNC    25

Well, I don't have regular PD. I have Dementia with Lewy Bodies and early onset Alz. I'm now 66, but my symptoms started about 5 years ago. The Lewy Body think is a combo of dementia and Parkinson's. In fact, it's common name is Parkinson's Dementia. The dementia starts first, then the Parkinson stuff starts slowing after a number of years. I give this back ground because the OP has run into the same craziness in getting a diagnosis as I did, and my wife is a family physician. It took a long time to finally get a glucose Pet Scan that showed the parts of the brain where my cells were dying. My symptoms and neuro tests were solid Dementia with Lewy Bodies, and a little less so for early onset Alz. The Pet Scan was rock solid for Lewy Bodies and fairly solid for Alz, with Lewy Bodies being the primary diagnosis. There are just far too many doctors who give a diagnosis where they don't have a clue, other than some general textbook stuff. You have to work you way through to a true expert who will listen and try hard to help. I don't understand it, but the neurologic diseases just seem to have far too many doctors getting it wrong, and that's a bit bad if you ask me. I started coming to this forum because my Parkinson stuff is starting off, still mild, but now question about it developing, so I wanted to get information from those who really know...the people who have the disease. Good luck to us all.

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TexasTom    706

Bill -- thanks for bumping the thread.  Yep, with YOPD there are a ton of doctors who don't recognize it.

 

For Delise -- hopefully you'll post a follow up on how you are doing and life is treating you.

 

For me, trying to exercise and get in daily walks with my Dog.  Still adjusting to "new normal" after DBS. 

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