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Posts (11)

Fri, Aug 30 1:01pm · Waiting on diagnosis in Brain & Nervous System

My spouse has sarcoidosis. In the meantime …. hang in there! They should have biopsied these. If it's sarcoidosis, they'll see what are called granulomas in these lesions and that 3cm mass.

Fri, Aug 30 12:55pm · Frontotemporal Dementia in Brain & Nervous System

wow …. maybe 20 years to diagnosis??

Fri, Aug 30 10:24am · Waiting on diagnosis in Brain & Nervous System

Hi Jl1 …

This DOES sound frustrating, and terribly disruptive to your life. Not being able to read would be a huge loss for me as well. I'm sorry you're experiencing this mess!

That being said, this sounds familiar. Having a potentially critical event that all this can be related to should make this easier to figure out. Other neurological problems without a specific causal event are often hard to diagnose. In your case, there at least one clue I think, in what you've written here. I'll start for now with one question:

Have you been diagnosed previous to your car accident with Sjogren's syndrome?

Fri, Aug 16 1:27pm · Any other caregivers of Frontotemporal Degeneration out there? in Caregivers: Dementia

Well, I got my results for the *second* second opinion, which basically made me sound like it's my depression (or hypochondria) and not a known neurodegenerative disorder. Same doctor did both of the second opinions, but first one was about 3 years ago, so I wanted to see what Best Doctors would think regarding a PET scan 3 years later.

Question …. is it possible for subjective cognitive impairment or mild cognitive impairment to be the result of some kind of functional thing, where there's no apparent damage but things don't seem to be working as they should (apathy, inability to organize at work, difficulty writing clearly and coherently, etc.)?

Fri, Aug 16 1:21pm · Any other caregivers of Frontotemporal Degeneration out there? in Caregivers: Dementia

Can we put this back under an appropriate topic …. or is it okay to keep this with the caregivers' questions?

Thu, Aug 15 9:26am · Any other caregivers of Frontotemporal Degeneration out there? in Caregivers: Dementia

Yes it is … but very very tentative. I'm noticing increased isolation (and desire for it), lack of motivation, memory issues when wanting to initiate something ("I have to put away the _____", and then I immediately forget to do it. Word difficulties (finding the right one) are sporadic and nothing new, though they seem to have increased to some extent. I'm becoming increasingly unable to organize tasks and as of last week changed my employment status to part-time. In the meantime, to reduce the impact of the decrease in income, I've applied for partial disability from my company-sponsored disability insurance company, which has been a chore in itself :-(.

Had a recent PET scan to look for glucose metabolism abnormalities.
Slight asymmetric decreased metabolism in the temporal lobes, lesser extent parietal lobes as well as slight decreased frontal lobe metabolism. However, there is preserved metabolism in the precuneus and posterior cingulate gyrus. *Pattern abnormal though not typical of a specific nerve degenerative process*.

Brain volume: Brain volume is normal for age (ed. which seems to contradict findings from 2016).

Additional findings: No significant low dose CT findings.

IMPRESSION: Abnormal FDG uptake in the brain, however pattern is not characteristic of a particular neurodegenerative disease.

Jun 20, 2017 · Video Q&A about Innovations in Neurosciences Leadership Forum in Brain & Nervous System

Has there been any new developments on treatment for Frontotemporal Degeneration and Dementia? Any sign we’re making progress toward a cure?

Mar 26, 2017 · Frontotemporal Dementia in Brain & Nervous System


Welcome to the journey. I was diagnosed with FTD last August. There haven’t been too many symptoms other than some mild word issues and subtle mood shifts. Given I already have chronic depression and it’s also one of the symptoms of FTD, it can make things uncertain at times…. is it the usual depression, or is it my FTD getting worse … that kind of thing. I’m not sure about getting support from groups specific to FTD, but there are a number of other brain health support groups that may be able to help, such as National Alliance on Mental Illness (NAMI: http://www.nami.org/http://www.nami.org/). There is also a specific website dedicated to the various forms of frontotemporal degeneration/dementia called The Association for Frontotemporal Degeneration (AFTD: https://www.theaftd.org/) which more specifically deals with this set of brain diseases. The AFTD is having its 2017 Education Conference on Friday, May 5th in Baltimore, MD. I intend to go to this conference and get myself educated, and get some support from those who have dealt with FTD personally and as physicians and psychologists. There appears to be some promising research which may eventually result in clinical trials … and the AFTD website would be a great way to keep track of anything coming down the pike that might prove helpful

I’ve found individual and group therapy to be helpful, and I was already in therapy for the depression .There are evidently some antidepressant and other psychoactive drugs that help. I was already on a drug regimen which turns out to be potentially useful. If you have the resources, do get yourself into some sort of counseling/therapy. I find it important to get resources together for support …. especially if I’m feeling like withdrawing.

Feel free to get in touch with me.