After more than 18 months we finally have test results

Belle · March 20

A miracle happened this month...the VA neuropsych department finally sent us the detailed test results from the test he took in June 2022. The same test results we have asked for, his VA neuro requested, his PCP requested, his social worker requested, and his private insurance neuro requested. The last requestor was his PCP and they must have pushed the issue because the report showed up out of the blue in a message this week. Since June 2022 all we've had is a vaguely worded report in his appointment record with a mention of neurocognitive impairment but no diagnosis in his file which caused all sorts of issues when he was in the hospital last year. It was mostly nursing staff arguing with me that he was not impaired because he could talk to them right before they discharged him and let him get an uber to come home while I was telling the social worker that there was no safe discharge plan.

A few things jumped out at me. 1) his executive functioning skills range from mild to moderate/severe impairment instead of low average which I thought we were told in the follow up appointment; 2) there were multiple recommendations for follow ups needed by a cardiologist, an imaging study, and a need to look into some twitching/jerking motions he has in his limbs. None of those follow ups has happened because the report was lost for so long.

As much as I want to say we are done with testing I think we need to push for a bit more information. Without going into too much detail, after spending time last night reading some studies on PubMed, some of the scores look like they could be pointing more towards LBD which would impact any medications he might need in the future. Needing to rule in or out LBD and maybe getting some diagnosis and/or medications for the jerking limbs are the only reason I think we should do anything else at this point. Is it terrible that I'm hoping for vascular or alz for the actual probable diagnosis?

mrspgee · March 20

You are one more victim of the health system and lack of empathy in our doctors. Your husband's test results were available in 2022 and several medical professionals failed you. This is the big hurdle we need to eliminate. I encourage you to find out all you can about his diagnosis so that you will be better prepared to handle what lies ahead. I wish I had more hope to give you but I am dealing with my husband's 4-5 years of an ALZ diagnosis. I don't want to discourage you or paint a picture of gloom and doom but as you know there is no known cure for ALZ and it is a cruel and progressive disease. It is devastating to watch a LO disappear as you watch and caregiving becomes extremely challenging. Maybe you'll get a less severe diagnosis after all the reports have been reviewed. In the meantime take care of your well-being. You'll need to stay strong for him. You and so many million others are in my thoughts and hopes that the science/medical community will develop a way to arrest or cure this horrible disease.

FTDCaregiver1 · March 20

What a travesty, almost 2 years to finally get a report that's vague and lacks any diagnosis with, by then, having outdated recommendations based on assumptions? Not familiar with the VA system personally but heard the horror stories. I do know this; my hands were literally tied in getting benefits and appropriate targeted care for DW until I had a definitive diagnosis. Fortunately, I did this directly with her neurologist until we finally did a PET scan (year into figuring out her diagnosis and at least 3 separate tests were inclusive) which clearly showed EO FTD. Believe you're on the right track in nailing down the diagnosis first, seems based on what I've read, you might be throwing darts at a board hoping your hitting the mark without a good diagnosis in place. Doesn't the VA system have any Specialist you can work directly with you and these doctors to ensure getting a diagnosis in place? or am I in La..La...Land. Hope someone from the VA system can chime in.

Belle · March 22

Thank you for your responses. Yes, I feel the VA is failing him tremendously with this issue. He did end up getting an MRI through his other insurance which showed some atrophy and continued evidence of small vessel ischemic disease (SVID). His private insurer can't diagnose him yet because they need to see a recent neuropsych test and they have referred him to a neuropsych practice to be tested.

The VA neurologist, without seeing the detailed neuropsych test results and recommendations, released him from their care and referred him back to rheumatology since he has an autoimmune disease. His private insurance referred him from rheumatology to neurology so the complete opposite plan. Both SVID and his autoimmune disease are linked to dementia so not sure why VA neurology doesn't think they need to see him any longer since he has complained about memory issues and his test scores decreased significantly in the last 5 years.

Anyway, I think I'm starting to sound like a broken record at this point but the bottom line is either the VA or his private insurer needs to diagnose him with something in their official records so we can access services he needs. I know how much dementia sucks as I've been through this before with another family member but it was a lot easier to manage their care needs once a diagnosis was in place.