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New normal

Stage 3 & 4. Candid discussion. ??

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@NN: None of us is a neurologist and we cannot possibly suggest any diagnosis. We are just patients, and nothing more. Our knowledge is based on personal experience alone. That said, from what I've read and what I've experienced myself as a patient, I don't understand why a diagnosis of MSA is even likely to a patient like you.

 

1)Datscans are typically positive in patients with PD-plus syndromes. You have had a series of normal Datscans arguing against the presence of degenerative parkinsonism

2)MSA is typically and in the overwhelming percentage of cases a rapidly progressive disease; most patients are bed or wheelchair-bound within the first 5 years. ALL functions are severely affected, including the ability to talk, write, communicate.  Thankfully, you don't seem to share none of these aggressive features.

3)MSA responds poorly to levodopa. Levodopa response in MSA patients is typically medium at best and transient. Any patient responding well to this drug after 4+ years of treatment is highly unlikely to have MSA.

4)MSA is characterized by severe symptomatic autonomic impairment. That's the reason MSA patients  can't stand up, walk, perform normal activities. Subclinical evidence of autonomic dysfunction, documented by diagnostic testing, does not suffice for a diagnosis of MSA, and  is non-specific -found in many neurological and other diseases.

 

I have used the term "typically", because it must of course be emphasized that there are exceptions to the above clinical presentations, with slower progression, better response to levodopa and "milder" symptomatology, but, again, I highly doubt you fulfill the diagnostic criteria.

 

 

NN, I really hope you don't have MSA,  I don't believe you have it, and urge you to ask for another opinion from a MDS.

 

I remember that both you and your husband have a positive history of Lyme.  Has neuroborelliosis been ruled out? (now, THAT's a diagnosis almost impossible  to pinpoint..).

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NN,

 

I lost a friend to MSA. Sadly Joanie was diagnosed and in less then 5.5 years passed away. It was a blessing she did due to the last three years of her life. Wheelchair, spoon feed and only communicating with frustration and ilegiable printing.

 

It's was a very sad and speedy death.

 

I hope you find your answers and none being MSA.

 

D

Edited by Discovery
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@NN: None of us is a neurologist and we cannot possibly suggest any diagnosis. We are just patients, and nothing more. Our knowledge is based on personal experience alone. That said, from what I've read and what I've experienced myself as a patient, I don't understand why a diagnosis of MSA is even likely to a patient like you.

 

1)Datscans are typically positive in patients with PD-plus syndromes. You have had a series of normal Datscans arguing against the presence of degenerative parkinsonism

2)MSA is typically and in the overwhelming percentage of cases a rapidly progressive disease; most patients are bed or wheelchair-bound within the first 5 years. ALL functions are severely affected, including the ability to talk, write, communicate.  Thankfully, you don't seem to share none of these aggressive features.

3)MSA responds poorly to levodopa. Levodopa response in MSA patients is typically medium at best and transient. Any patient responding well to this drug after 4+ years of treatment is highly unlikely to have MSA.

4)MSA is characterized by severe symptomatic autonomic impairment. That's the reason MSA patients  can't stand up, walk, perform normal activities. Subclinical evidence of autonomic dysfunction, documented by diagnostic testing, does not suffice for a diagnosis of MSA, and  is non-specific -found in many neurological and other diseases.

 

I have used the term "typically", because it must of course be emphasized that there are exceptions to the above clinical presentations, with slower progression, better response to levodopa and "milder" symptomatology, but, again, I highly doubt you fulfill the diagnostic criteria.

 

 

NN, I really hope you don't have MSA,  I don't believe you have it, and urge you to ask for another opinion from a MDS.

 

I remember that both you and your husband have a positive history of Lyme.  Has neuroborelliosis been ruled out? (now, THAT's a diagnosis almost impossible  to pinpoint..).

Thanks, Christie,

 

I intended to send you a private message because I didn't want to openly engage in specifics. When I attempted that before, the exchange became personal...and at this point I don't need more challenges...I will share openly in hopes my experience will help someone.

 

As I speak, I have a horrendous headache and rapid palpations. BP is 160/98...pulse is 80. I am lying in bed after going to bathroom. In daytime, Standing BP at times goes to 100/70. In the past I have awakened with 260/150 BP. Orthoscpotic tilt table test is extremely positive. 5 sleep studies reflect atypical sleep. Recent one showed no REM, 267 leg movements in 266 minutes, .5x stop breathing. In one of them I stopped breathing for 30 seconds...when I breath it is mostly shallow. O2 averages 80%. I've tried C pacs with little success. Neuro said I need to follow up with pulmonologist and get assisted breathing.

 

I've developed a dry cough that comes for no reason. When I cough, excess saliva comes and it begins a cycle of saliva, choking, coughing True story...I have layed on bed upside down with wash rag in mouth to collect saliva so it would not go down throat. I've since learned acidic juice such ikas pineapple juice will slow down saliva. I've coughed so badly I nearly faint...and have considered calling 911 at times because of the serious choking.

 

In last few weeks, I now have excess saliva pretty much all the time. If I have any physical stress...bump my elbow...etc....excess saliva flows faster.

 

3 times I have had stroke like episodes. Last one about 6 mos ago, transported by ambulance. I was paralyzed on left side, could not speak but never lost cognitive awareness. No TIA was determined. Each time Ive regained function within 24 hours...this last time, I still have left side weakness, and I dont tremor as much on left.

 

Ive been hospitalized twice in 2 years for severe bladder infection...not UTI.....bladder...last time I was in for 2 weeks...Phoenix hospital finally put me on rare anti biotic IV. I have had bladder problems for years...including interstial cystitis

 

I was hospitalized last year for 10 days for bowel incontinence and had to have catherization. No determined dx.

 

Now, I've lost sensation in bladder...so I retain urine. I make sure I urinate approx every 6 hours to keep from over extending bladder. Have significant bladder pain after urinating..not uretha....bladder.

 

I have had unusual bowel problems for 4 years. I had complete work up at a distinguished hospital which proved, normal. The GI specialist detected a slight tremor in my finger. That was beginning of neurological tx since he sent me to MS specialist. I was dx'd probable MS. Then symptoms went more to PD because I developed more tremor and other PD dominant traits.

 

Now, I have little sensation of urgency of BM, and generally empty complete lower bowel each session. After, I get very weak and generally lay down or rest approx,30 minutes. Dr says that is hypoorthostatic BP based.

 

Last cognitive tests showed increased impairment in front temporal lobe...executive function, completing tasks. I fight apathy and initiation daily. Memory and judgement is deteriorating rapidly. I remember no locations. I don't remember last sentence in a conversation. It appears communication skills are good since I write well. Keep in mind I take approx one -two hour to post...and I keep focused because I can read what I last wrote.

 

I told cog/psych dr, it is as if a file drawer of short words has closed. I retrieve higher level words instead. So I talk to everyone as if I am lecturing academia. Really weird.

 

DH and I both have neg Lyme tests. I'm very aware of lyme. My grandson has rare acute chronic Lyme disease @ 11 yrs old..and son in law has had Lyme disease for 15 years. Terrible experience.

 

In last few months, speech and voice and breathing are changing. My voice goes from normal, soft, hoarse for no reason. Speech is halting and pauses between words is increasing, word substitution is increasing rapidly. I said crotch instead of groin to dr. ( someone may think that is no big desl...it is for me, as I have always been very conscious of words..I was very embarrassed. That simply is not me) I seldom say a sentence now without a word replacement.

 

I have temperature changes...sweating episodes where i have drenched sheets.

 

These symptoms have occurred and worsened in the last 4 years. The pace has quickened.

 

Good news is I still have quick wit and sense of humor. Actually to the point of being annoying. (Which is no surprise to most readers). Yesterday, in a restaurant, I intended to put my back against the door to open it as my hands were full...instead, I leaned against the wall and kept pushing til DH said "i think you've missed your mark..". I laughed so hard cuz it was so silly...me pushimg hard against an existing wall..I give thanks every day for being healthy and still independent. I can keep up with normal daily stuff...house keeping and cooking...but it takes a lot of concentration. I walk indoors without a cane.

 

Christie, if u are still reading...neuro recognizes DaT scans are atypical. With the rapid progression the last few months and the classic PD symptoms, he feels MSA with PD symptoms is most likely. Terms are only relevant to existing situation...pace of disease? It has been 4 years since initial dx...I am now experiencing gross autonomic episodes..and daily activity is affected. L Dopa response? I have increased significantly over 4 years...as symptoms are not responding. I should increase now...but am trying to hold off. I've read in white papers, MSA and PD can exist with negative DaT scans. (After hearing DH's history iof Agent Orange exposure in Viet Nam, Neuro said it explains all DH's atypical symptoms and neg DaT scan.). Which also explains why both of us hv PD.

 

Sorry this is so long...unless one sees total pic, it is hard to understand. I hesitate to share all of this...and believe me, there's more...because it's not so cool to read.

 

I have to say I think exercise is one thing that has helped me...when watching TV or reading I stretch and strengthen legs by using an exercise ball for 2-3 hours.

 

I would love to think neuro and I are mis interpreting my scenario. But one cannot not deny the cards on the table. We discussed options. Dr suggested rx...or recording BP supine and standing for 3'weeks. I chose recording . I,think he is wanting to substantiate my dramatic orthostactic hypo tension. Because all my recent hospitalizations are atypical and difficult to,dx...it is appearing the brain is the perpetrator. I cannot manufacture the episodes...they,are real. Origin is atypical. Neuro says origen of brain dysfunction pry is in lower brain/ upper brain stem which indicates wide range & atypical conditions....AND why Dat scan is negative. L dopa decrease is essentially out of sight.

 

I am grateful I have PWP on the forum who care and understand. I have not told anyone...and DH doesn't know my research. What he DOES know is his observation of my decline...which I generally joke about. Yesterday, I joked about one of my "atypical" actions...and he got teary. "Does it bother you when I joke?" He is a quiet man and keeps much inside....if he doesn't respond , then I know it struck a nerve. "Should I not joke about it any more?"

 

He nodded siilently and took my hand.

 

That is my life now, Christie. It is what it is. I appreciate any of your thoughts, as you are a doctor as well as a patient and have a unique view. I hesitate to get another opinion as I am weary....so very weary of doctors...and the web of mis diagnoses etc...feeling like a lab rat. If it is PD or MSA Pd...the results are virtually the same....I have many other fish to fry at this time.

 

We are planning a road trip of 4 mos this summer with a bucket list in hand. First to Michigan by May...and be on Vancouver Island on shoreline the straits of Juan de Fuca in August for 10 days.. Last week I drove our Harley trike for 2 hours...this week we will try kayaking again with a professional kayaker who is a nurse. If we can do that...it is kayak and motorcycle this summer in a trailer pulled by a small rv van....with a toilet (yay).. our bucket list includes a pontoon fly plane experience somewhere over Puget Sound...a raft trip down the Colorado, and kayaking again in beautiful blue rivers in WA state.

 

Thanks, my friends.

 

NN

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#Word search....

 

Oh my, did THIS hit home!!! This has HUGELY become a problem for me at work. I have had a hard time remembering names and little things for several years, but over the past year or two, the names of common objects escape me constantly.

 

At work I am constantly pointing to things like coffee filters, Ketchup, extra styrofoam cups, which can sometimes be out of my reach with my short height. I have taken to pointing, because if I stand there trying to remember or say the name of something it will take forever.

 

Wow!!! I'm NOT alone with this. I have Alzheimer's on both sides - my mother, her brother and my father's mother, so I greatly fear getting that. However, my neuro said the MRI indicated I did not have Alzheimer's, thank god.

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I read that you shouldn't be worried when you can't recall the name for an apple but if you see it and is clueless what that is  then you are in trouble.  My sister is always bragging about some little kid at church who has a fantastic memory.  Well... he's retained information for 5 years maybe but we are adults and our brains have been through a lot and it's overloading day by day so c'mon now. 

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NN -- A lot of that sounds familiar, but not likely MSA.

 

I jumped up out of bed (well, got up too quickly) and over I went. Missed the dog (thankfully).  My BP had been rock steady (pun there, need to use when I remember) at 110/70 POST OP from DBS. Brain Swelling. It was wonderful, felt great, pee'd without issue, moved when I wanted to.   Now that I am four months post op my wife is worried about me again.  Post Op - cut my sinemet to about 1/4 what I was on (Now 1 25/100 every four hours, ER at night) but the on/off is much better. Hills (doing great) and valleys (some tremor), but things have shifted a little.

 

Cognitive - some days are worse. Some days are great. A bit like that file cabinet that was knocked over, can not locate anything but if I lean over a pick up something I can remember it.

 

Youtube video from the VA just nails it. Thinking and Memory Problems with Parkinson Disease LINK

 

Biggest thing I found to help with all symptoms. Exercise till I work up a sweat, and keep going.  

 

It is odd as Dystonia would wake me in the middle of the night. The "Claw" would return (hand turned in, foot turned in). I always thought dystonia fully subsided when sleeping, but would wake me or keep me from drifting back off to sleep. DBS made a huge difference (ya!) but not that darned Peripheral neuropathy is waking me up at night. A little like a toe that hurts until you smash your thumb with a hammer and no longer notice the toe! 

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Hi To,m

I didn't know you were a veteran also.Glad to look at your video.But while we do have some problems there are ways to improve it.

Memory and recall can be improved sort of like mental exercise,if you don"t use it you lose it.

Like the turtle versus the rabbit .Sort of like being slower keeps me out of trouble.

I did a call in awhile ago on C-SPAN You can actually go back and listen to your call again,I have the link.Well I saw I was a little slow on a few things but I did get my point across and kept it short

Dr.Low spot,Think,plan and Act,lol

I also found a good youtube on driving with PD.

https://www.youtube.com/watch?v=ws4o6nUALnw#t=530.234625

Good luck with your DBS I had a friend who is thinking of having it also.

best

john

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Johnnys,  No I'm not a veteran, just pointing out the series of video's from the VA on Parkinsons is a great resource. It is interesting in our Rock Steady Boxing classes and with Parkinsons meet up how much every one is so different. As a whole those boxing seem to have less progression than friends who just attend meetings and are not active.

 

That video on cognitive decline does describe me, but that isn't me in the video.

 

Thankfully I'm still driving.  I do recommend all of us go for a "tune up" drive with a driving instructor. AARP has has a list, as do most insurance companies.  For me it was good, biggest issue is a harder time breaking gradually as when I am off I stomp the break pedal. :(

 

Oh, John is featured in this video, and in our Rock Steady Boxing Classes. His wife commented he is doing better after working out with us for the past year.  We're all still competitive, so makes some of the exercises fun!

 

Trivia my ex-wife was a 68D (Army MOS). She is now a surgical nurse, great profession. Also great we are still on good terms as she can give me her opinions of surgeons in town! Also some great feedback when the surgical team is speaking that patients still hear you subconsciously.  On, 97th General Hospital in Franfurt, Germany.   I was civvy, but would fly out of Frankfurt and leave her my German Plated BMW when I was gone. Drover her first seagant crazy trying to figure out where she was hiding me. Health and Safety Checks!

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I am not stage 3 or 4 ,but I am a vet and the VA has a bunch of informative videos  on PD for all stages and symptoms . Also a lot of the VA Neurologists are tops in there field . The one I  see in Buffalo is only at the VA on Wednesdays . He is in charge of the University of Buffalo's neurological dept and also works at the Buffalo Brain and spine institute as well as a MDS . My point is that the VA is no longer a 2nd rate facility as stereotyped in the past . I believe all the videos are accessible on you tube .  Just type in VA Parkinson's disease .

 

Dan

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Texas Tom, not to totally alter the subject, but has your service dog learned how to stop a Parkinson freeze? If so, do you have any suggestions on where I can look to get some directions on training. Thanks. Bill.

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A little follow up on the driving video.I have found being aware of just what we are doing (concentration) eliminates a lot of worry over our performance behind the wheel.The deficits can be dealt with ,for how long  we only know.

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Texas Tom, not to totally alter the subject, but has your service dog learned how to stop a Parkinson freeze? If so, do you have any suggestions on where I can look to get some directions on training. Thanks. Bill.

 

I'll post a follow up in "Service Dogs"

http://forum.parkinson.org/index.php?/topic/21493-service-dogs/?hl=%2Bservice+%2Bdogs

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A little follow up on the driving video.I have found being aware of just what we are doing (concentration) eliminates a lot of worry over our performance behind the wheel.The deficits can be dealt with ,for how long  we only know.

 

No cell phone. To No talk radio shows (music is good).  I am concentrating on awareness of other vehicles, speed, lane position.  Then I forget to take the correct exit!

 

What helps in cell phone on LOUD, Google Maps.   Phone is resting in console, I can hear it but can not see it. "Exit 253 in one mile" will jog my memory back to where I'm

going.  I know where I am coming from, I know where I am going... but at times don't recognize where I am at.   Routes I take at least three times a week, no problem.

Routes I take once every three or six months, don't remember the land marks to remind me I'm on the correct road.

 

If I need to look at my cell phone, pull of into an empty parking lot. Stop the vehicle, then look at my cell or directions.

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Hi Tom,

Losing where I am on strange roads sounds familiar.I experienced it first a few years ago when I went hunting early.IT was a bit scary but it doesnt come up much more.Im always reminding my self of just paying attention of driving and no other thoughts allowed,lolIt seems to work well and I hardly get lost.I keep my radio volume down also.T intersections are also to watching out for and trying to be at a good angle when pulling out as youknow how stiff we can be turning our head to look.

A few weeks ago I switched my c/l to another brand.Im getting alot fewer myoclonic jerks and better overall  PD symptoms.The brand I was on was made by Actavis 25/100 it had a R539 id mark.

The brand i'm taking now is Mylan Pharmaceuticals ,cL2,c/l 25/100

Its a wait and see as I have had remissions before.

best

john

Edited by johnnys
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Driving? Yes, the driving thing. A number of docs have suggested I give up my license, because I get all confused in multi-lane traffic, strange places, changing lanes, and just basically driving in strange places period. Even with my wife to help navigate. My current solution is that I don't drive more than 2 miles from my house, which includes grocery store, post office, hardware store, downtown, city park, and most of my favorite restaurants. I live in a town of 1300, no four lane roads, 3 stop light, and top speed in town of 20 mph, so I feel like I'm basically safe here, but I realize it is getting close to time. Of course, just because I drive doesn't mean I'll remember where I'm going or why, but I'm retired so who cares. I didn't know Parkinson people had these problems too. Good luck.

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On ‎2‎/‎21‎/‎2017 at 0:07 PM, New normal said:

Hi guys....

 

Back to the topic of this thread.3rd stage PD...I will share some personal info that in liklihood is premature. However, regardless of outcome....I am experiencing third stage...which is simply the same emotion that consumes us in first and second stage....fear of the unknown and the need to tell someone who is not closely associated.

 

So....i,have been through a lot of tests...and I will learn results next Monday. I have researched a lot...we all know that feeling...and accoding to what I have read, I really believe I know the dx. Hmmmm...have we all been there?

 

I have not shared information with anyone, even DH...and being the "talker" I am...it is very hard to keep anything inside. I keep going back to Dr Low as referenced in the previous loooong post and trying to disregard anything I dont know for sure...hmmmm, sound familiar to you?

 

The results of tests I know...the mention by my neuro he believes my problem lies at the base of my skull...and the symptoms I experience...I think the dx may be MSA...Multiple System Atrophy.

 

I keep thinking I shouldn't write this until results next week...then I think...hmmm...this is what we all experience...it is just at a different level. Like grandparents still experience dramatic life transitions...even tho society focuses on teenagers and their hormones...we ALL are walking down the same path regardless of where we are..

 

Yep..and the need to tell SOMEONE is gnawing at me inside...but...this forum and the strong PWP's counsel has taught me to stay focus...like Dr Low and John would say...and patiently await the outcome.

 

My post is not to discuss the dx...that will come Monday..hopefully...my purpose is to simply relate my emotions 8 years since obvious symptoms appeared... this thread is meant to be a safe place where we can share our fears...and be accepted.

 

So far cog/psych tests show more impairment, sleep studies show zero REM sleep time, ortho static hypotension is off the charts...literally.....lung exam is norm...stopping breathing at night is not coming physically, but from PD.. high Bp and low Bp does not reflect cardiac change...all autonomic systems are malfunctioning noticeably enough to impact daily living. Added to the big clue is dr referencing low brain stem.

 

All of this would explain why I have had 5 or 6 negative DaT scans.

 

Enough...i think I have had my "fix" of whining....we will know soon...should we prepare by speculating? Should we put everything on a shelf and create our denial walls? Should we tell family and friends our fears in order to gain some spotlight time?

 

Or do we write in the forum to strangers in social media......hoping our situation can bring some kind of help to others....

 

Sorry for the length...will tell you status on Monday. I take the risk of looking very foolish and self obsessed. I just needed to "talk" and hopefully I AM self obsessed and way off the mark...that would be a good thing.

 

It is what it is...

 

And I wll keep on swimmin'

 

NN

I was digging through forums and I discovered this.  I have a CPAP; which I should use more often.  Sometimes, I get short of breath, like I realize I was breathing shallow or my breath pattern is off for some reason. Since I am a vet of the middle east conflicts, I had my lungs checked and they said I was fine.  This statement hints at a PD issue. Is there a PD issue with breathing? 

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