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Why so hard to get diagnosed?!?

Jordana B
Jordana B Member Posts: 9
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in I Am Living With Younger Onset Alzheimer's
:/ I am so infuriated as to why it is so hard to get doctors to take me seriously!! Why does being highly educated, very intelligent and a health professional make doctors think I am "just stressed out." I would not be ruining my career if I did not know that something is happening to my brain!!
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  • keep_hope_alive
    keep_hope_alive Member Posts: 30
    10 Comments
    Member
    edited January 6

    What medical professionals have you seen or testing have you had?

    I wasn’t taken that seriously either until I repeated my request to a neurologist and he gave me a screening for cognitive impairment.

    Stress can be a cause for cognitive impairment, though.

  • Jordana B
    Jordana B Member Posts: 9
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    Thank you for replying! I feel so alone! I have seen a neurologist for an MRI and a neuropsychologist for a neuropsych eval that the neurologist referred me to and I see a speech therapist for "cognitive rehab" that the neurologist referred me to. Everything was normal on the MRI and neuropsych eval and they are saying the cognitive rehab is for my ADHD difficulties. Those tests were over a year ago and I am noticing that I cannot do my job anymore, so I do not know who to talk to about that.

    I do not want to wait until my deficits are measurable conversationally because by that point I should not be doing my current job. The tests they gave me are not sensitive enough for early detection, IMO.

  • Iris L.
    Iris L. Member Posts: 4,536
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    WelcomeWJordana. You say your neurocognitive testing was normal a year ago. If you believe that there is a significant change in your abilities, after one year there should be some evidence on testing, if you were to be retested.

    You say your testing was not sensitive enough for early detection. I hope you had more than a mini-mental exam. A thorough neurocognitive testing takes about four to six hours, depending upon your abilities.

    Have you had any verbal or written warnings regarding your work performance? Has your cognitive rehab speech therapist discussed work accommodations?

    If you cannot do your work, you might consider taking a short term medical leave of absence pending completion of your medical evaluations.

    Were you given blood tests to check for medical causes of memory loss?

    Were you evaluated for sleep apnea, which can cause memory loss?

    Are you on any medications that can cause memory loss as a side effect?

    It does take a lot of time to evaluate memory and cognition because there are so many possible causes that must be searched for and ruled out.

    Iris

  • Jordana B
    Jordana B Member Posts: 9
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    Iris- Thank you for responding. Yes, I had a full neuropsych work up. I am self employed so I have no income if I don't work.

    I have not had a blood test done for memory problems that I know of, just for hormones, thyroid, and normal panels. What blood tests should I be asking for? I am going to ask for a lumbar puncture.

    I already have diagnosed sleep apnea, REM sleep behavior disorder and persistent limb movement disorder and a CPAP.

    I am not on any medications that cause memory loss.

    I don't drink or do drugs. What do you call the blood test for taus or amyloid?

  • Jordana B
    Jordana B Member Posts: 9
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    Oh and yes, the cognitive rehab is helping me with ideas to make me remember what I need to do like take my medications and know what I am supposed to do each day for work and hygiene,but it is not enough help. Can you hire someone to help you set up your reminders and alarms?

  • keep_hope_alive
    keep_hope_alive Member Posts: 30
    10 Comments
    Member
    edited January 7
    https://alzconnected.org/discussion/comment/233227#Comment_233227

    it’s interesting you say you have REM behavior disorder (RBD):

    ”RBD is strongly associated with certain neurodegenerative disorders. About 97% of people who have isolated (idiopathic) RBD will have Parkinson’s disease, Lewy body dementia or multiple system atrophy within 14 years of diagnosis.”

    I’ve heard this before, but this is from:


    https://my.clevelandclinic.org/health/diseases/24465-rem-sleep-behavior-disorder-rbd

    You may want to ask specifically about these conditions as well.

  • Jordana B
    Jordana B Member Posts: 9
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    https://alzconnected.org/discussion/comment/233233#Comment_233233

    Thank you, I will. I have a virtual appt with my GP on the 17th.

  • Iris L.
    Iris L. Member Posts: 4,536
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    edited January 7

    Jordana, there has recently become available blood testing for taught and amyloid. You might want to read about that and ask your neurologist. Keep in mind that abnormal test results can impact your ability to get insurance and in other ways.

    KHA brought up an interesting point about RBD. Read as much as you can about this, and then discuss with your neurologist.

    Also keep in mind that neurodegenerative disorders generally progress slowly in the beginning, so there may be delays in receiving a firm diagnosis. During this time optimize whatever you can, such as using the CPAP to keep your brain oxygenated during the night while you sleep. Follow the habits of Best Practices, they can help you.

    If you had extensive testing from a neuropsychologist, the testing should have been sensitive enough to pick up deficits, especially since you were symptomatic. These tests can help diagnose not only the dementias but depression and other neurologic or psychiatric conditions. Repeat testing after a year can give you more information.

    Yes, you can hire someone to help you remember to set your reminders and alarms. But if you are at this point of needing outside help, should you continue to be working? I know you need income, but how are you able to complete your work to satisfaction if you cannot set an alarm? Read about work accommodations at askjan.org and search for all of your issues.

    You might also think about taking a break from working in order to get some answers for yourself.

    You have a lot to deal with. You can speak with an expert at the Alzheimer's Association. There are Care Consultants who are specialized social workers who are knowledgeable and can provide local resources and help with planning and decision making. You can call the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant.

    Iris

    Addendum: a member on the Caregiver board reminded me about white matter disease. Read about that. It causes cognitive problems but not Alzheimer's.

  • Jordana B
    Jordana B Member Posts: 9
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    Member
    https://alzconnected.org/discussion/comment/233272#Comment_233272

    Thank you very much for the thoughts. I have my sleep doctor appt scheduled and decided to take action on some work safety measures as I realized I don't need a doctor's permission to take temporary safety precautions.

    I appreciate your help. I will trybto get my REM sleep behavior disorder captured in a in lab sleep study as tge only one I have done was in home and it was only 5 hours of data.

  • keep_hope_alive
    keep_hope_alive Member Posts: 30
    10 Comments
    Member
    https://alzconnected.org/discussion/comment/233769#Comment_233769

    Yes definitely get a lab sleep study.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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