Waiting for Dr in Chicago

Shell

Finally got a referral for my LO for a neurologist at a clinic specializing in dementia and they can’t see my LO until February of 2025. Is that normal? (I’m new at this)

My LO recently got an MCI diagnosis. We are seeking treatment and I worry things could change a lot in 8 months.

M1

Welcome to the forum. Yes unfortunately, that's pretty common. If you think your LO is a Candidate for some of the newer medications, it might be worth calling around to see if anyone can see you sooner.

almost everyone gets a diagnosis of "MCI" to start off, most seem reluctant to use the dementia word until they've seen the person twice-i personally disagree with this and would take it with a big grain of salt. If you look to the right under Quick Links and Groups, there is one for new members that contains a lot of useful information including the Tam Cummings DBAT staging tool, you can judge for yourself where you think your LO is.

Read a lot of threads and you will learn a lot. You have come to a good place for advice and support.

Jgirl57

Our first neurology appointment was also quite awhile after the referral . I used the time to really read up on brain functions, and everything I could find about MCI, dementias/alzheimers. By the time we went to the appointment I felt a little more in control of our situation. Welcome and so sorry the wait is so long for the appointment.

harshedbuzz

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

The wait for a neurology appointment can be long even in communities that are well-served medically. I am just starting to have mom assessed for cognitive issues. Family members agree with me that there has been changes in her thinking and in her short-term memory. We started with her PCP in April who ordered an MRI (Some volume loss/mild ischemia) and blookwork (hormones, vitamin levels OK but positive for Lyme Disease). I am on a 3-month-long wait-list for a callback from the Memory Center which should happen by the end of July to schedule an appointment approximately 6 months out from then. I could take her to a neurologist closer to home a bit sooner, but the doctor would be someone who sees dementia as a part of their practice rather than a comprehensive center where research is done.

While you wait, I would make sure that you have all of the legal paperwork in place to protect your LO should they become unable to make decisions in the future.

It is possible that your LO's disease will progress in that time to some unknown degree. The rate of progression can vary a great deal among individuals and kinds of dementia so it's hard to say where you'll be in 2025. It's also possible your LO has already progressed into dementia, but the clinician wasn't comfortable giving that diagnosis.

I agree with the others that it makes sense to read posts here. Especially the ones listed here-

https://alzconnected.org/group/32-new-caregiver-help

I would also read up on treatments. After reading about the newer infusion medications, I am not sure the benefit/risk ratio would make them an option for my mom's situation as they don't seem to help women to the same degree they help men.

HB

Quilting brings calm

This happens with almost all my parents’ ( now just mom) specialists. It takes forever to get referred, then a few months to be assigned an appointment which is several months in the future.
It’s not just appointments. I was told in April I needed an ablation. I waited a month for the office to even schedule it. When they did, my procedure date is Oct 7th. Soonest they could do even with the doctor telling me he didn’t want to wait until after my scheduled Sept knee replacement. Which of course needed to be cancelled.

JeffShort

This was my experience. It took a about a year to get a referral to a neurologist, and then the physician to whom we were referred was dubious. Even though it takes a long time, do your homework on the neurologist. After referral, we had about an eight-month wait.