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BillBRNC

Hope You Can Answer

4 posts in this topic

Dr. Okun, I have a question that might not be possible to answer or that you might prefer not to answer, so I'll understand if you want to pass of this. About a year and half ago, my FP diagnosed me with worrisome neurodegenerative cognitive declines, or something like that. He referred me to Wake Forest Baptist Medical Center for a complete evaluation in their memory assessment clinic. By all accounts, I got the best clinical doctor there, who is a geriatric neurologist or something like that. She did a day long of testing, then had me come back for a Glucose Pet Scan. After the Scan, she sat down and talked with me an my wife. She said the Scan showed very strong probability of Dementia with Lewy Bodies and also solid probability of early onset Alz, and maybe something else in there somewhere. After a follow-up visit about a month later while I was on Exelon, she told me and my wife over and over (because we ask over and over) that there is really no question that I have a progressive neurological cognitive something or the other, and that further examination would not really help to come up with something more solid, other than an autopsy at death. At the time, I had minimal to little at all of the Parkinson symptoms, so she said there is a good chance it could take a good long while for those to come up. Now, truth is I had had cognitive issues for almost 6 years by then, starting very slowly and progressing slowly with lots of fluctuations to the good and to the bad. Well, it now has been about 10 months since that assessment, and I've been being handled by my PCP up to now, but mostly just monitoring things. I on Exelon, Celexa, and much heart medication for DCM that has stabilized and more or less gone for a few years with an EF around 40. Over the past 6 months, I've noticed a very noticeable uptick in my non-cognitive complaints. Fatigue that I had not had for a few years, leg pain, heavy legs, knee pain, buttock pain on both sides arm pain, and some shoulder and neck pain and more started to slowly get worse. Much worse at night, but real difficult to walk when I get up in morning. I shuffle some, trip some, fall several times, lose balance some, all the good stuff. I even had a mild concussion when I fell a few months ago, but I'm fine now. I'm going in a few days for a physical therapy assessment by someone who has Master's in various things, but a specialty in Parkinson. Everyone wants me to go to a local neurologist too. I don't want to go anywhere, but that's just because I'm sick and tired of going to doctors and hospitals. I've agreed to go to the therapy assessment just to get her opinion on whether my physical complaints are Parkinson-type and probably Parkinson-related, and to somehow quantify how far along I am.

 

My question for you is this: Do you think there is any reasonable chance a good local neurologist will accept the diagnosis from the medical center and just focus on current  medications and treatments to improve quality of life, plus give best guess on progression, or will most neurologists want to do all the tests all over again (neuropsych, Pet, and such) in order to make their own determination of diagnosis prior to handling the medications and such? I have no interest in getting another opinion, because if it differs, then I'll have to get another one to break the tie, and I truly have trust and confidence in the original person at WAke (who has moved and I can't go to her again). I know this is convoluted, but my wife is a doctor and she thinks the more the better when it comes to opinions, tests and all that junk. I don't know you at all, but you seem to have your head screwed on right, so I would truly appreciate your opinion on this. By the way, I've had a ton of other tests to rule out everything else, all done prior to my initial diagnosis.

 

I'm ready to close down this look and guess stuff. I went to the best I could find at Wake, what she said made sense, and there is nothing really to be done. I just want some peace, but I'm willing to go along with what others want so long as it truly really truly is needed.

 

Thanks very much. Bill.

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Bill,

 

If you bring your records usually retesting is not necessary.  I would recommend a second opinion and at Wake there are several great movement disorders docs that may handle your issues.  If you don't get the diagnosis correct then treatment can't be administered properly.  I also find that once a comfort level is reached it helps patients and families.  I can't tell from reading the above that the diagnosis and treatment plan are correct but I personally think another expert doc is a great idea even though I completely empathize with all you have been through.

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Dr. Okum, thanks for reading my long message and taking time to reply. I guess I'm giving up. My wife is taking me to a excellent neuro that trained at Wake and does some clinic work there. He knows my wife's partner real well and my wife lesser. I'm going next week to some type of Parkinson movement assessment person with a Master's degree from Wake who works for the neuro. Between the two of them and my wife, they will decide whether to send me back to Wake, and they won't have any ego issues to stand in the way. So I guess I'm doing pretty much what you have said. I told my wife about you and showed her your bio, and she was very impressed that you would take all the time you take to work on this forum. She was also very impressed with your CV. I'm hurting so much now that I don't care what they do so long as something gets done. The good side is I did my last tax organizing today. From now on, my wife gets to work with the CPA. It is crazy in a way that the Parkinsonian stuff isn't really my main problem, but right now it is taking the lead over my cognitive issues. Thanks again. Bill.

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Hang in there Bill.  I really hope they can help you.

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