My husband was diagnosed 4 1/2 years ago with Parkinson's, and the local neurologist sent him to a Movement Disorder Specialist 4 hours away who diagnosed him with Lewy Body Dementia, though it was in early stages and he didn't have all the symptoms yet. Since then, his physical symptoms have progressed faster than his cognitive symptoms, but I just figured we were lucky and perhaps even doing something right. The doctor who diagnosed him moved to a different state, but we have continued to go once or twice a year to see another doctor in the same office. Yesterday she changed his diagnosis to Multiple Systems Atrophy.
It is just a different variant of atypical Parkinson's, but I'm quite shaken by a change in diagnosis. I at least knew what I was dealing with, even though he didn't fit all the patterns, and now that stability got taken away. There are a few things I would have done differently, related to urinary incontinence. I'm glad I had the dementia diagnosis, because that gave me the justification to take over and make his life simple and stress free. Does he not have dementia? It isn't a major symptom of MSA, but he clearly is cognitively and emotionally impaired.
I started the process of arranging brain donation (luckily he likes the idea). I really want to know which kinds of damage will be found in his brain.
Does the new diagnosis make any difference? She gave him a higher dose of Sinemet (for movement)--a high dose is recommended for MSA but not for LBD. She said no difference in course, but it does make it more likely he will die before the last stages of dementia (not a bad thing). Different things to dread--breathing difficulties instead of hallucinations.
I don't know if this is an argument for continuing to see a specialist or not. Our local neurologist prefers to have a specialist make the tricky decisions about balancing medications (what makes movement better can make thinking worse). But specialists do tend to make it more complicated.
pamsc-a neighbor was diagnosed with Parkinson's and Pick's disease. He was a very sad case. They went from clinic to clinic with many med changes. I'm not saying the same thing will happen with your husband-but the man is now safely driving his sports car and making excellent executive decisions.
I joined the MSA yahoo group, and posted early this afternoon. So far just one response, and that rather condescending. Lewy Body has a yahoo group for spouses only; the MSA group has spouses and caregivers and the people diagnosed all in one group. I don't want the new diagnosis because I like Lewy Body community. At least I can still stay here--thank you Joan for making it clear that this is a community for spouses of people with any kind of dementia.
Interesting story, bluedaze. My husband did get checked for the reversible causes and does fit very well in the broader atypical Parkinson's umbrella so the closest thing to good news I have much hope of is something where the body goes before the mind is completely gone.
Hummm . . MSA(?) That one is new on me. As for does it mean anything? You need to remember that ANY diagnosis for our people is next to impossible.
You can remove a bit of puss from an infection and know the type of bacteria that is involved. You can take a sample from a tumor (biopsy) and know EXACTLY what type of cancer it is You can do EKGs and angiograms and know exactly what is wrong with the heart BUT You cannot (YET) see exactly what is happening inside a living brain.
This is a huge problem in our world. (except for the new AD PET scans and some VaD) none of our dementias show up on a living exam. Autopsy is still the definitive diagnosis.
Diagnosis of a dementia today is still 99% based on symptoms and we all know how variable those can be.
To me personally a Dx only matters to better understand what future Sx I can expect and get ready for and to perhaps better understand which medication MIGHT help with the Sx I am trying to deal with at that moment. And because we all know that the dementia Sx are so variable and that medications are all effectively experimental until you happen to find something that works, personally I would not get too excited about a name
Remember that any Dx or disease name comes from when some doctor identified a collection of traits (symptoms or tests or findings) and wrote them up in the medical literature. These articles do then lead others to look for similar patterns and label something a diagnosis, but until the patterns have been identified thousands of times the name of a paticular diagnosis may not become standardized or fully accepted.
Look at AIDS. 30+ years ago people started getting sick and doctors began to see patterns of symptoms. These were written up and originally it was called "Gay bowel syndrome". Then other patterns of symptoms were identified and the name was changed to AIDS. Then science finally discovered the viral cause and the name became HIV. Same disease, same symptoms, same progression, same cause. (except now that we have a cause, we also have a "cure")
This Parkinsons/Lewy Body thing is still very new in the medical world so you can expect the names to change and develop.
Pam, remember that YOU know him best. YOU know there is something wrong (whatever they want to call it) and YOU know what treatments work best or can report back whenever something new is tried.
In the meantime YES(!) I too am happy to have a 'dementia in a marraige' community. Jim
After I read through MSA site my impression is that MSA is a "catch all" Dx that labels "There is a whole lot going on in the brain. We can describe what's going on, but have no answers as to why or how to treat it, other that deal with the symptoms as they appear."
I agree with Jim the specific Dx is a label the MD's & Specialist's we see places upon the patient based upon the patient's ability to perform specific tests and respond to pre-determined sets of questions combined with a physical exam. With Alzheimer's "dementia" the Dx is a function more of the MD's intuitiveness and experience it is far from being an exact science. In my opinion the key to obtaining the best medical care for our LO's is to find the compassionate MD, one who is available and is willing to listen to our input! Selecting an MD who has a full grasp of the "arms available" in the pharmacology armory that can be deployed to ameliorate the symptoms and suffering our LO's are exhibiting is of paramount importance. No matter what the label, we are dealing with a LO who has an incurable disease. Our role, as I see it, is to ease our LO's suffering while making sure we caregivers survive and avoid burnout, far easier said than done!