We have been waiting for a diagnosis for my husband and although I know it's difficult to pin these things down, we were expecting a PSP diagnosis. I just got a call from the nurse telling me that the PET scan indicates Alzheimer's disease. I am SHOCKED. They want him to have a DAT scan and if the DAT scan is abnormal, then it could be CBD. If normal, then likely Alzheimer's. He said CBD and Alzheimer's can look similar in a person. He did not mention PSP.
While none of these diseases are a walk in the park, Alzheimer's scares me more than any of them. Probably because I've seen people linger years after their minds have gone.
I believe my husband has an excellent care team. The neurologist is a specialist in movement disorders at the Neuroscience Institute in a large metropolitan area. He seems very sharp but this possible diagnosis seems way off the mark to me. If I didn't trust this doctor as much as I do, I would think he doesn't know what he was talking about. I even had the nurse verify that he was actually talking about my husband and not some other patient.
My husband doesn't have dementia (he may have lost a bit of reasoning skills but nothing else). He started with physical symptoms at least four years ago. He has a Parkinsonism gait, is starting to get that Parkinsonism stare. He had numerous falls over backwards. Has urinary and bowel incontinence. Do these symptoms look like Alzheimer's? Of course, he also has MS but it's unlikely that MS is causing these symptoms.
We were both kind of prepared to take on the diagnosis of PSP or maybe even CBD but I just can't stand the thought of this. I haven't mentioned this to my husband and probably won't until after the DAT scan.
A great Monday morning. I think I'll go for a walk. Looking forward to input from this community.
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journeyofjoy
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He could have Alzheimer's with either PSP/CBD also. I have only cared for dad, CBD, so I don't have any really useful Alzheimer's input.
Ron
Unfortunately the waiting for a diagnosis can take years & numerous test as it did for my mom with PSP. As you already know the search can become unnerving.
I can tell you one of my best friends friends has Alzhimers and we still laugh together & enjoy our coffee chats with our husbands. She has the best laugh. Today l did not tell her that my grandson got married on Saturday because l knew she would not remember. . . We still talk about our old memories... we do the best we can while we can. Sending you & hubby hugs... Granni B
Thank you for your kind response. I don't really know why I want a firm diagnosis when there isn't much that can be done about it, but I somehow think we'll be better able to face it if we know what we're facing.
We ALL feel that way! We want to know. Doesn't matter that we can't do anything about the disease. Knowledge, a dx, gives you grounding, an identity - "knowing where you fit" in this complex pathology universe. You know what to read. You know what to prepare for. You know what support communities to seek out. It DOES matter!
Yeah, I think I need a new rug. They aren't infallable. They are human. And the brain is a complicated and beautiful thing.
I did do a little reading and the pathology of Alzheimer's and CBD can look the same apparently. If I read that right in my mild state of panic this morning.
Other than the PET scan, nobody would ever meet at my husband and think of Alzheimer's but they definitely think of Parkinson's.
Was the PET an amyloid PET? If so, then there's no denying that.
Lots of people with supposed CBD end up with Alzheimer's Disease upon brain donation. Both are tau-opathies but the form of tau is different, and where it is in the brain is different. Plus AD has amyloid. (Hence the value of the amyloid PET.)
Typical AD is loss of memory, as you know. And it is a dementing disorder.
There is a form of atypical AD called hippocampal sparing. This was discovered by Mayo. (This is the brain bank our organization works with in helping families receive brain donation reports.)
Are you saying if the PET scan was amyloid, then it is Alzheimer's? From what I know about Alzheimer's, he just doesn't look like he has that at all. No dementia but failing body. He is scheduled for DAT scan next week.
The scan was PET CT Brain with FDG. Nothing was said about amyloid. They weren't looking for Alzheimer's so maybe they didn't request the amyloid. Thanks for your help.
They aren't diagnosing at this point. He has a DAT next week. The doctor said if DAT is abnormal, then likely CBD. If normal, likely Alzheimer's. I just can't buy the diagnosis of AD unless it's a very unusual type of AD.
My husband has been seeing this doctor for several months after seeing the MS neurologist the last couple of years. I assume the doctor is trying to diagnosis him based on all of his findings and observations, rather than a single test.
I agree adding Alzheimer's to the diagnosis does not help, but as Jeff says they can sometimes coexist. One may shorten the effect of the other, however and there are many here to attest that the progression through any diagnosis is not the same for everyone. or what we expected.
M y husband was diagnosed with CBD, but up until then I had 'picked' MSA as it seemed to describe what I could see happening! His brain was slowly shutting down. I accepted the diagnosis of CBD and possibly with FTD, but the Ward doctor in charged did not. He continued to treat my hubby for Parkinson's. My husband finally put a stop to that once he realised he could say 'No' to taking the meds.
I still don't know for certain if diagnosis was correct since the only way to confirm is by brain autopsy and this wasn't done. However, I do know my personal reading of his life expectancy was way closer to reality than the doctor's!
The neurologist also commented that a doctor's rooms is called a 'practice' since they are working on 'best guess' unless there are tests to back up their diagnosis!!
Brain diseases are very difficult to diagnose, and I believe they are finding added complexities as more research is done.
Go with your gut feeling! Take a deep breath and get on with life, and make and enjoy whatever happy episodes you can find. Make memories like bazooka!
Yes, we need to add more fun into our lives! I get so tired of doctors and therapists saying that maybe we should check into an adult family home. I want my husband to stay at home. We have remodeled our home and have a great bathroom situation, one level, etc. I can bring in a hospital bed and hoyer lift if necessary, as well as a PT caregiver.
Hi there, a lot have been misdiagnosed as Parkinson’s or Alzheimer’s disease , a brain scan, will show several Fontal and brain stem and other deteroration and shrinkage of the brain, psp is included in a group of diseases called Parkinson’s Plus syndrome or Atypical Parkinson’s, psp being a much faster progress,, also responds very poorly to Parkinson’s medication, palsy is another tale sign, falling backwards, and they usually show signs a few years before being diagnosed, I guess I was blessed first appointment with the Neurologist my brother was diagnosed with psp, so the wondering finally has a name to it, unfortunately never heard of psp before disease. Hopefully they find the problem soon. Take care. Nettie
He has several symptoms of PSP and that's the diagnosis we expected. However, I've read that CBD can show symptoms of PSP. A DAT scan next week. Just moving ahead. There really is no good treatment for any of this so were not losing ground but would be nice to know which road we're taking. Some days, I don't want to take any of these roads and would like to run away. haha
For the longest time our tertiary neurologist wouldn't rule out Alzheimers. He eventually settled on CBD. My husband never had memory problems and no dementia as most mean by that. I.e. He had cognitive impairment (speech and numeracy loss, task organization problems)
So our university neurologist had the same thoughts yours does.
In my husband's case the alien limb and mobility problems "won the day" for the clinical dx of CBD.
Anne, Is this your only online group? If my husband is diagnosed with CBD, is there a CBD group or can I just stick with this one? Frankly, I already feel at home here and don't really want to search for something else.
First of all, this group here is for both PSP and CBD per the sponsoring organization, the PSPAssoc of the U.K. The 2 diseases are so similar and CBD is just too rare to have much publicity of its own. You most definitely can stay here! And even if hubby's dx never becomes clear, but his symptoms match what we discuss here, stay connected
I never found a CBD group except for a very old-tech chat room on Yahoo Groups and several on Facebook. I didn't want to use the FB ones cuz my FB profile wb identified and I wanted more privacy.
Anyway, this site is the best, in my humble opinion.
I should also mention North America-based organization CurePSP also hosts an online peer support website (which also includes CBD).
Thank you Anne. I didn't know this was a UK website but I plan to stay on this one. I may also check out the CurePSP website. This might be helpful for finding equipment and also for navigating our Medicare system.
Right. These websites are so universally-accessible it hardly matters who hosts them. There are members here from Australia, India, France, Costa Rica, Spain, New Zealand Ireland, Canada and many others besides UK & US!
Ok. I just took a quick glance at that address you gave me. It doesn't look like they have an easy web access like this group. Assuming that's what you mean by low tech.
My husband can no longer walk and he has that "alien limb" problem - slightly. I kept asking him why he had his hand in certain places, especially when I was trying to help him do something and his hand would be interfering. I then read about "alien limb" and I think that's it. Also, his leg just kind of floats up in the air sometimes rather than keeping his foot on the ground when he's sitting.
I don't know what they're going to say about this Alzheimer's business but it certainly isn't like any type of Alzheimer's I've seen or heard of. I think they will land on CBD. His left side is affected much more than his right but the right side is now joining the left in acting up.
I will take a look at it. I don't know if I want to manage two groups but the help and encouragement from this site is really appreciated. Navigating this alone would be even more difficult than it already is.
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EYE SPECIALIST FOR DIAGNOSIS?
decisive diagnosis
Refusal to acknowledge PSP
to await definite diagnosis - to tell or not to tell
