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New normal

Stage 3 & 4. Candid discussion. ??

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Even without getting the scan do you think it's worth a shot to see an MDS that you have never gone to and see what he/she says now since it's been a long time since you had it done and you feel so confident that you have PD so maybe you will finally get a firm diagnosis?

^^^ Yeah, that.

 

NN - we all love you here.  I do wonder if, after 5 negative DaT's that maybe there's something else going on.  I'm far from knowledgeable enough to say for sure of course, but I'd be wondering about LBD (especially with your reported cognitive issues) as well as some of the Parkinson+ syndromes.  Also, I'd be wondering about tumors that just happen to be in the basil ganglia.  Maybe even Lyme and heavy metal poisoning (that your DH is suffering similar issues brings these to mind).

 

It might be time to have some of the screens for those done, or redone if they were ever done previously.  

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I appreciate all your responses. I have confidence in neuro. He has an extensive background in MDS. I guess i brought out the subject cuz it is looking more like he is correct...and I am preparing for the worst and hoping for,the best.

 

i think he will pry order another DaT scan and/or MRI. I pry have been on google too much. (Smile)

 

Now that I have satisfied my own curiosity, I will put aside speculation and await Monday's appt.

 

I am prepared for any answer now that I know more. If it is MSA, it is really not much worse than PD for me. I am a senior and have had a great life...I am fortunate. It is far worse to have these diseases when young and with family. The worse case scenario is the symptoms come faster...the end result is the same...just a bit more intense...as I understand it.

 

I posted this mostly for others who are facing similar things...in the hopes they won't feel alone. I have not told DH any info I have learned.....that is why I appreciate the forum so much. It helps to share and discuss...and I have benefitted just kniwing someone else knows.

 

DH is still dealing with VA re:Agent Orange from Viet Nam. For those who do not know..it is an herbicide that was used to defoliate acres and acres of forest. Now that millions of veterans are suffering consequences, the subject is getting more attention. PD is so common, that if you prove you were near shore and have PD symptoms it is presumed it came from agent orange...no more validation. DH was directly off shore from the defoliated area. The Navy has a list of ships that are known to have been docked on shore which automatically puts them on the list for PD. DH has to get ships log to get his ship on list. "Blue water" ships are just now being added to the list of presumed dx. I mention this cuz agent orange could be cause of DH PD....which would explain why he has neg DaT scan.

 

I hope new PWP dont get upset about this thread...no one knows the future...and no one is alike. My experience is individual just to me. However, I have noticed there is no place for advancing PWP to share concerns.....and I maintain that advanced PD should be part of the discussion so research for a cure can get more attention.

 

Always a realist, I am now prepared....L knew there were large black bears on Vancouver island before I nearly hit one with my motorcycle....smile....i knew tides can impact kayaks on open seas which prompted us to hit shore on a "slack tide".... I am grateful I didn't let fear keep me from experiencing some of the best times in my life.

 

If it happens to be a new dx, we can prepare ...chart a revised course...and perhaps avoid some of brisk winds ahead.

 

SOOOOO, Monday, I hope I'll get an idea what is around the corner....and all,this speculation will be for naught...again, thanks for validating my emotions...it just helps so much to talk with people who understand.

 

NN

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^^^ Yeah, that.

 

NN - we all love you here.  I do wonder if, after 5 negative DaT's that maybe there's something else going on.  I'm far from knowledgeable enough to say for sure of course, but I'd be wondering about LBD (especially with your reported cognitive issues) as well as some of the Parkinson+ syndromes.  Also, I'd be wondering about tumors that just happen to be in the basil ganglia.  Maybe even Lyme and heavy metal poisoning (that your DH is suffering similar issues brings these to mind).

 

It might be time to have some of the screens for those done, or redone if they were ever done previously.

 

Thanks, Stump...as I understand LBD can only be verified by autopsy...tho there r docs who say different. Since cog test showed increased impairment in frontal lobe..they suggest I don't have dementia. But it explains my frustration of not being able to process normally.,,,and memory issues.

 

I would guess heavy metal would be most considered because of my personal history...I think that was done early in the game...but will ask Neuro. My grandson has chronic bacterial Lyme's disease at 10 yrs old...horrific for him..so,I,had doc test for,that..negative.

 

Your thought on tumors in ganglia is good suggestion and I will bring it up to neuro. I hesitate to go into autonomic systems affected to not over dramatize...but that is the third leg to the stool. One example......PD has slurred speech predominant. Last few months I have variant strength from soft..to hoarse..and normal.....but now more often than not ..I have halting speech..and pattern is not common in PD but common in MSA.

 

Thanx for the input...I have put this on the shelf now...per usual, I pry am overthinking this...as I,hv sd, it doesnt really matter that much if dx is changed...it is what it is....adapting is defintely a trait of PWP. ????

 

NN

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Even without getting the scan do you think it's worth a shot to see an MDS that you have never gone to and see what he/she says now since it's been a long time since you had it done and you feel so confident that you have PD so maybe you will finally get a firm diagnosis?

Sorry but this was directed at Ella for her peace of mind.

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I did do that, saw a MDS 1 year ago........no diagnosis, no "visable" symptoms. Will not give me c/l challenge either because no visible symptoms to justify challenge test.

 

So, still no visable symptoms today, I know, I know.........I "probably" don't have PD.   Don't want it, just would like to know what I do have if I don't have PD.  Is that too much to ask?

 

I know quite about about PD, if I wasn't so old, I think I would go to medical school to become a MDS, I sure have a good headstart!

 

In the medical community's defense, with no visible symptoms and all tests neg.........how can they diagnosis?

 

That is why I am on 2 anxiety meds and have no finger nails. 

 

Doing better than I was though, at least out of the "bottom of the well."

 

I still "dance" around that "well" occasionally, but am determined never to fall in again, it was hell getting out!

Edited by ellaangel2

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The best test, proven reliable over time, is the L-dopa challenge, carefully administered.  Does everyone have a 'right' to every experimental test from a doctor of their choice, in his or her poximity?  I have some problems with that. 

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The best test, proven reliable over time, is the L-dopa challenge, carefully administered.  Does everyone have a 'right' to every experimental test from a doctor of their choice, in his or her poximity?  I have some problems with that. 

 

Roger,

 

I agree that the L-Dopa challenge is probably the gold standard, but you have to have visible symptoms that the doctor can see for it to work.  My challenge was in his office and they did a thorough exam of me prior to the challenge and a second exam an hour after I took C/L. Not only did the challenge demonstrate improvement within my follow up exam, they explained to me some of the subtle changes that I wasn't aware of.  My doctor is a firm believer that this test can be administered in the office.  If no improvement is detected on the first dose, he repeats the test a second and maybe a third time upping the dose each time.  If you have PD, the C/L will eventually help some symptoms.

 

I think sometimes a patients symptoms are questionable or borderline. The imaging tests aren't experimental and can help confirm the diagnosis for the patient and the practitioner. Doing the same test 5 to 6 times over a long period of time in hopes that the result will finally change is insane. 

 

Do you think it's wise to take these drugs over the long haul if the diagnosis is in doubt?

 

Dave

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I did do that, saw a MDS 1 year ago........no diagnosis, no "visable" symptoms. Will not give me c/l challenge either because no visible symptoms to justify challenge test.

 

So, still no visable symptoms today, I know, I know.........I "probably" don't have PD.   Don't want it, just would like to know what I do have if I don't have PD.  Is that too much to ask?

 

I know quite about about PD, if I wasn't so old, I think I would go to medical school to become a MDS, I sure have a good headstart!

 

In the medical community's defense, with no visible symptoms and all tests neg.........how can they diagnosis?

 

That is why I am on 2 anxiety meds and have no finger nails. 

 

Doing better than I was though, at least out of the "bottom of the well."

 

I still "dance" around that "well" occasionally, but am determined never to fall in again, it was hell getting out!

I'm sure you are relieved at least that it's not PD. Didn't the MDS suspect something else or did you show no symptoms at his office so he gave you the brush off?  Are you still having the internal tremors or did the anxiety meds take care of that?

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Roger,

 

I agree that the L-Dopa challenge is probably the gold standard, but you have to have visible symptoms that the doctor can see for it to work.  My challenge was in his office and they did a thorough exam of me prior to the challenge and a second exam an hour after I took C/L. Not only did the challenge demonstrate improvement within my follow up exam, they explained to me some of the subtle changes that I wasn't aware of.  My doctor is a firm believer that this test can be administered in the office.  If no improvement is detected on the first dose, he repeats the test a second and maybe a third time upping the dose each time.  If you have PD, the C/L will eventually help some symptoms.

 

I think sometimes a patients symptoms are questionable or borderline. The imaging tests aren't experimental and can help confirm the diagnosis for the patient and the practitioner. Doing the same test 5 to 6 times over a long period of time in hopes that the result will finally change is insane. 

 

Do you think it's wise to take these drugs over the long haul if the diagnosis is in doubt?

 

Dave

 

That depends.   Do the L-dopa pills make the patient feel better?  If he or she thinks they do, and where the improvement outweighs the detriments of not medicating  I'd take the pills and be thankful for the relief they provide.  That said, never take more than minimally necessary to achieve  where you need to 'be at' on a given day -  not a problem for me because if I take more than three to five half pills of 25-100 the flip-flopping commences.

 

.

Edited by Rogerstar1

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Hi Ella

if you don't have signs of PD why are you concerned about having it.maybe I missed a thread of yours,please enlighten us why you are so concerned?

As far as having a nervous setback its good to know they do not cause any physical harm,socially it is always embarrassing ,I myself had a few before but while even now when I wake up with it ,I know how to keep setbacks short .

best

john

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I had some very alarming symptoms; pin prick and electrical sensations randomly, all over my body, every few minutes, all different neuro type sensations.  Had spinal tap and many, many other tests.  About a month after these sensations started, I started with an (internal) tremor, in right calf of leg and sometimes in my stomach/chest area.  Dr. could find no medical reason for any of my symptoms.  Neuro gave me Gabapentin for symptom control, it worked for pin pricks, but not for tremor, which happened only at rest.  After much research, Parkinsons looked very probable to me.  When you are experiencing symptoms that no one can see, it is very hard to get respect or even the proper responses from Dr's, let alone friends and even the people closest to you.  It all was the perfect storm for my breakdown.

 

I was so sure that I had PD, I joined support groups, came on line and did lots and lots of research.  I actually lived (in my mind) like a PWP.   I experienced the grieving process and all.  Went to 2 MDS, was hard to get in to see them, but with great effort, I managed somehow.  Of course, no visible symptoms, no diagnosis.  Can relate to what a lot of you have gone through and you people have visible symptoms.  Tough stuff.  It was so frustrating.  PCP drs. were useless and utterly rude about it!  

 

Believe it or not, I lived many years believing I had PD, after all, it is slow progressing and I had no other medical answer, these sensations and tremor had to be caused by "something."  Went to counseling for a long time, lost some (non-friends) along the way, it challenged some of my true relationships, I basically struggled through life, even became suicidal at one point when I was at the bottom of the "well."

 

It was only after 6-7 years with still no visible signs of PD that I am coming to realize I (probably) don't have PD.  I say "probably" because somewhere very deep down, I still am not completely convinced, it is hard to change a way of thinking after so many years of believing it.

 

I feel like I understand PWP, because, you see, I lived like a PWP in my mind for so long.

 

So, that is my story.

 

I am still on this site because I feel a connection and a sincere interest in PWP.

 

I am not so sure I am welcome on here though.  Actually, I completely understand if I'm not.

 

Just let me know, and I'll go away. 

Edited by ellaangel2

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That depends.   Do the L-dopa pills make the patient feel better?  If he or she thinks they do, and where the improvement outweighs the detriments of not medicating  I'd take the pills and be thankful for the relief they provide.  That said, never take more than minimally necessary to achieve  where you need to 'be at' on a given day -  not a problem for me because if I take more than three to five half pills of 25-100 the flip-flopping commences.

 

.

You have Parkinson's, taking L-Dopa is not an issue. My question is, what does this drug do to a normal person? If you have to take pills, they should at least treat the underlying condition.

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Yeah, but once upon a time my PD was a less than certainty.  Indeed it became the diagnosis due to an L-dopa challenge.  I'm not arguing that a 'normal' person should or would undertake a regimen of pills which served no purpose.    Have a terrific day, PD people! :-P      

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I am not so sure I am welcome on here though.  Actually, I completely understand if I'm not.

 

Just let me know, and I'll go away. 

 

You are much more than welcome sweetie.

 

You are one of the few people -thankfully without PD- who can  understand how we feel.

 

I'm sure you will be of tremendous help to many parkies (and non-parkies) cause you are empathetic, kind and knowledgeable.

 

Please stay among us and be our friend.

 

Share with us your fears and thoughts.

 

You don't need PD to be one of us. You already are one of us.

 

Christie

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Ella,

 

i know it's been a long hard road for you....one that hasn't truly ended.

 

You are more then welcome to hang around with us....glad you still want to....lol

 

D

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MSA NEURO VISIT:

 

"I've been treating you from the beginning as if you had MSA. We need to watch your progression to determine for sure. Until then we monitor you and treat you as if you have PD and/or MSA.You have every symptom of MSA. The only unknown factors are progression which we are evaluating.And we would not be treating you differently. We will not speculate on stages or future time frames. We just take it a day at a time." Neuro.

 

Additionally he said, " Dat scan will eventually make the differentiation.

 

I told him of road trip we plan for this summer based on our bucket list. He said, "Don't let anything stop you. Do as much as you can as soon as you can." Which is good advice to everyone regardless of PD.

 

Hmmmm, think I need to digest this a bit. That's my story and I am sticking to it. (Smile) Rainy Phoenix...we stopped driving cuz of all the accidents so DH and I are in a room filled with silence as we process all of this.

 

Thanks for the input. I really appreciate it.

 

NN

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NN, I think you need to get a second opinion.

 

Datscan is highly unlikely to turn abnormal after a series of 4-5 normal results. Anyhow, Datscan cannot differentiate between PD and MSA (It is positive in both diseases).

 

I'm sure you neurologist is great and highly experienced, but even the best doctors make mistakes. Some doctors don't easily change their opinion/diagnosis, despite all evidence to the contrary.

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Sometimes we like to self diagnose from too much research online and we then insist we have that disease of the month.  Hopefully it's not as bad as you may think.  Fingers crossed.

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I confess to having read only portions of this topic, but one of the more recent responses mentioned taking the meds and just seeing if you are better with them (positive and negative) than you were without. The writer might not have meant it this way, but that is what prompted my question. My question is how do you know when the medicine (in case Sinemet) has done all the positive that it can do. I know bad when I feel it, but it is hard to say when good is as good as it gets. And I can compare the two. I have Dementia with Lewy Bodies, so I also have a lot of cognitive stuff, but lately the movement stuff has become more of an acute issue. My Parkinsonian stuff probably never will be as bad as most of everyone else here, but it hurts and limits my movements, thus limits my already limited quality of life. They tell me both will keep on trucking until I'm dead and gone. I don't worry too much about that, because I won't know anything anyway, plus hopefully my wife will let Hospice do its thing at the right time. But for now, I'm just curious how you know in your mind that Sinemet has done good and about all the good it will do? I'm only taking 25/100 3 times per day right now, but I'm going through the initiation phase. Yes, I'll listen to my doc, but I just like to hear from those who are there now. I think it might be the Zen of Sinemet I'm asking about. Thanks.

Edited by BillBRNC

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Hi Bill,

 

You will know if the Sinemet is working if you start moving more freely.  Your pace may pickup, your arms might swing more, and overall you feel less stiff.  I especially notice a difference when walking down my basement steps.  You are still on a very low dose so you may not notice a difference until you titrate up.  By the way, you have a wonderful attitude about life.  Take care, Gardener

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Gardener, thanks for the reply. I guess it would be fair to say that 25/100 is making a bit of difference, but not much and not for more than a couple hours per pill, and not at night at all. So I assume this means that I'll be getting more relief as the dose goes up, so long as bad side effects don't come in. Up to now, no problems not even nausea (fingers staying crossed). Dang I hope this stuff does some real good, because walking with my dog is on of my favorite past times, and it really is one of the few, so I'm a fan of anything that helps there. I'm also hoping to be able to do something of substance with my grandkids. You take care of yourself, Gardener.

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Gardener, thanks for the reply. I guess it would be fair to say that 25/100 is making a bit of difference, but not much and not for more than a couple hours per pill, and not at night at all. So I assume this means that I'll be getting more relief as the dose goes up, so long as bad side effects don't come in. Up to now, no problems not even nausea (fingers staying crossed). Dang I hope this stuff does some real good, because walking with my dog is on of my favorite past times, and it really is one of the few, so I'm a fan of anything that helps there. I'm also hoping to be able to do something of substance with my grandkids. You take care of yourself, Gardener.

I appreciate the responses...and will address them separately...but Bill struck a chord with me. Bill, I am so like you...I want to know what is ahead...regardless of what it is...I just want to know from the real PWP (people with PD.. That's why I started this thread...cuz the conversation dims when PWP advance.

 

You may notice we put a signature line which states our dx date and meds. As tou read the forum ya kinda get a sense of progression from the poster as it relates to their current meds.

 

Here is a summary of my meds. I am now on 50/200 sinemet 5 x per day. I started on your doseage 2013 for balance and rt side tremor. I take it thruout a 24 hr period. I, personally, like to keep levels evenly balanced and it works for me. I feel little change when I awake...I have good sleep. Meds were increased when I would "break thru" with symptoms about 2 hours before nxt scheduled rx.

 

Your question is kinda like one of the few I asked the neuro....MSA -P ...as I understand it...is pretty similar to PD in many ways...and eventually the dopamine will not help symptoms. So I asked "when I dopa no longer works for me...do I return to all my symptoms? If so, what is available to help the symptoms?" He avoided the topic...and said, "we will deal with that when it comes. Dont think too far ahead. We take it stage by stage." I guess that applies to all of us.

 

So, Bill, keep asking...keep researching...so you can be your own best advocate. You will find PWP are very unique in the disease process and in their own method of management. You will discover a sixth sense that understands your own progress and what works especially for you.

 

As we all say, concemtrate more on what you can do...set positive goals...and maximize your strengths. Exercise...educate....endure...and you soon become an improved version of yourself....trust me...when you make PD your companion rather than your enemy...the world is a better place.

 

Welcome to the forum...and good luck to you...please keep posting.

We all learn together.

NN

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NN, I think you need to get a second opinion.

 

Datscan is highly unlikely to turn abnormal after a series of 4-5 normal results. Anyhow, Datscan cannot differentiate between PD and MSA (It is positive in both diseases).

 

I'm sure you neurologist is great and highly experienced, but even the best doctors make mistakes. Some doctors don't easily change their opinion/diagnosis, despite all evidence to the contrary.

Christie, I really respect your opinion...and feel it a compliment that your take time to voice your thoughts. I read some articles thatt MSA often does not respond to DaT scans because...again, as I understand, the uptake of dopamine is different in different parts of the brain. The chemical process in the cerebellar region(? I get the areas mixed up..but at the base of the skull..merging into,the brain stem)is different from the uptake in the place of PD...and that is why MSA impacts organs and autonomic systems as well as motor sklls...sooner than PD..

 

What I take away from neuro...he strongly suggests I have MS-A because if clinical presentation...and history. Christie,, what tx option is there for any other dx? L dopa works. I am severely symptomatic without it. 90% controlled with it. Lately, I have had a lot of strange autonomic symptoms appear which all appear on differential dx charts....and indicate MSA

 

What do you think a different MDS wd do or find?

 

I really am ok with this..it really doesn't change my life that much. DH and I have a long good bye ahead....,but we are 72 & 70...while we r still,active, we have had a great life.

 

A good,thing...I have bn extremely worried that I may get mean and hateful....in MSA patients, while autonomic systems fail earlier than PD, cognitive skills remain longer. Altho, I dont see that happening.

 

Tell me, C, how you think a new neuro wd help. I have been to several with dx of PD.

 

What is yr understanding of MSA-P as it differs from PD?

 

Again, thanks for yr help.

 

NN

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