Does anyone have multiple diagnosed illnesses besides P/D? I have 5+

Posted by bruizersmom @bruizersmom, Oct 28 1:33pm

Besides a diagnosis of Parkinson's Disease, I have Peripheral Neuropathy, Irregular heart beat (Bigeminy), Epilepsy, mild Cognitive Decline, Raynaud's Syndrome, vision problems, GI problems, and a host of other disorders/problems all of which may be non-motor P/D symptoms/problems/disorders (which would fill up the whole page!)
Please let me know if and what you have besides P/D! I'm on multiple Mayo groups and many topics sound oh,so Parkinson's to me.

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Profile picture for jatonlouise @jatonlouise

@janna2 Doctors need a good laugh every now and then. In fact, al our health care professionals could use a joke here or there, given that their plates are so full. And we neeed to think of ways to help them help us, like coming to your doctor's appointment prepared like you would for a meeting, current status, any quesstions, any observations that may be helpful to your doctor to know, a list of meds that you need refills for, etc.. So many folks have the expectation that doctors know everything; they know alot but they can't read our minds and, given that PD seems to be have unique manifestations for each patient, any info you give them may be like that last puzzle lpiece on a jigsaw puzzle, that brings the whole thing together.

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@jatonlouise My doctors all listened to my bunch of symptoms/disease/disorders but chose to ignore thesestated outright that they would ONLY treat "the four signs of Parkinson's" .... my list did nothing until I had a Big Attack, which for me is: tremors, balance problems, vision problems, anxiety, speech problems, suddenly shivering, suddenly peeling off clothing layers, memory disfunction (remember names, words, lousy vocabulary, etc) illegible writing...I guess that's it.
Since that presentation in front of my current Movement Disorder Neurologist, I've been sent to a neuropsychologist or neuropsychologist, speech evaluator, cognitive psychologist, and rheumatologist. Each one of them will get the whole list plus the list of doctors plus the list of meds, plus allergies and naturally explain my current everything, or things that pop up and disappear. And hopefully each of those specialists will treat their specific, single PD problem.
As you see, there's no point in describing the whole ball of wax unless each/anyone asks for it.
I keep a running list of questions for each, no jokes unless they start joking, have my refill requests if any. I've no dark glasses on: this is the Only way I can help myself, and I have to accept that each doc has an appointment time limit, but I might insult them by talking past the limit to squeeze in everything. This is what I expect from all.

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Profile picture for bruizersmom @bruizersmom

@jatonlouise My doctors all listened to my bunch of symptoms/disease/disorders but chose to ignore thesestated outright that they would ONLY treat "the four signs of Parkinson's" .... my list did nothing until I had a Big Attack, which for me is: tremors, balance problems, vision problems, anxiety, speech problems, suddenly shivering, suddenly peeling off clothing layers, memory disfunction (remember names, words, lousy vocabulary, etc) illegible writing...I guess that's it.
Since that presentation in front of my current Movement Disorder Neurologist, I've been sent to a neuropsychologist or neuropsychologist, speech evaluator, cognitive psychologist, and rheumatologist. Each one of them will get the whole list plus the list of doctors plus the list of meds, plus allergies and naturally explain my current everything, or things that pop up and disappear. And hopefully each of those specialists will treat their specific, single PD problem.
As you see, there's no point in describing the whole ball of wax unless each/anyone asks for it.
I keep a running list of questions for each, no jokes unless they start joking, have my refill requests if any. I've no dark glasses on: this is the Only way I can help myself, and I have to accept that each doc has an appointment time limit, but I might insult them by talking past the limit to squeeze in everything. This is what I expect from all.

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YIKES! Nothing like the 5 blind men describing an elephant. In my search
for the WTF is wrong, THREE TIMES I spent about 2 weeks in the hospital
having 9,843.8 tests. The first resulted in the shruggin of shoulders and
an Rx for physical therapy (Germans believe that almost anythng can be
cured by exercise and fresh air.) The second one resulted in a finding
that, despite the fact that none of the comorbidities were at all severe
and were totally under control with the meds, that together they
conspeired to plague me with the total fatigue problem. The 3rd and final
episode of testing me almost beyond all endurance almost resulted in yet
another " We have no clue" The doctor in charge and his 5 student doctors
had another go at doing the pulling the arms while your resist routine ,
hitting the knee with the ruber hammer, all that stuf. Then he gave me
some l-dopa and came back in an hour.. I was like being at a tent revival
with a faith healer and the healer put his hand on my head and BOOM! I was
healed! I could get out of bed on my own; walk a bit to a chair, sit down,
stand up walk about 10 feet ,etc. It truly was like a miracle. I know there
are diseases that mimick Parkingson's and they have to be careful not to
misdiagnose the patient, because if that's wrong, the treatment will be
wrong and that wouldn't end well. But it surprises me that this simple
test wouldn't have been done somewhere along the way as standard practice.
If he hadn't done that test, I would have ended up in a nursing home, and
not much more than a lump of protoplasm that barely spoke (but when she
did, she had a vocabulary of a sailor )and never moved under her own
steam, just waiting to die. I certainly hope that at least the doctor who
tried seeing what my response to l -dopa would be has incorporated it into
the prescribed tests. Who knows how many other folks there are whose
llives would have been dramatically improved by that.. As unpleasant as my
loooong search for a diagnosis was, I still consider myself the most
fortunate human on the planet because all the stars in the universe had to
be in the the right h place in the right time with the right answer. So
many decisions I made over the past 15 years led me to land here. Decision
to move to Germany to be with our son and his family, our decision to move
into the neighborhood where I selected the Primary care doctor just because
he was only a block from our flat, who turned our to be fantastic, and who
had a friend who was a neurologist and referred me to her, and, my
neurologist just happened be on the panel that assessed the l-dopa pump for
use in the EU, so she knew alot about it and I got to be the 2nd person to
have one (excluding the folks who participated in the field trials.)an My
German insurance pays for every cent of it. 6,000 Euros every month for
just the med for the pump., as well as almost every medical expense I have.
The only thing I've paid for has been my rollator, and that was because I
declined the free one and wanted one that has a seat and a basket, so that
was about 250 EUro Have no clue what the hospitalizations cost because the
hospitals bill the insurance directly, and insurance pays them directly and
sends me a notice that they've paid the hospital. Am I a lucky duck or
what?!!

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