so how long does it take to get into care!!!

drock57 · August 26

Seems to be extremely difficult to get treatment for my ALZ. Have contacted 4 treatment centers and had medical records and referals submitted as well. The first one simply said it can take some time to get in. ?? they have no idea even?? hmmmm. The second one said I could get an initial appointment next April, as in 2027! 8 MONTHS??!!! The third said said they may be able to get me in this December. Well…. 4 sounds better than 8. The fourth one has yet to even respond at all. Had my hopes up when I found out there are actually successful medicines and treatments, but what does it take to get it! Is this the norm?? My ballon of hope is slowly leaking ….. falling….slipping…. back to earth. Well, I guess its better to not get my head in the clouds by actually believeing this is all going to work out. Sorry for the rant, had no idea our great american medical system is becoming 3rd world.

GEH · August 26

Where abouts do you live??

drock57 · August 26

Currently in Nebraska. However, lived in Kansas, our kids are still in kansas and are working towards moving back to kansas. So I have three feelers out here in nebraska, but reallly want to get in at KUmidwest.

GEH · August 26

GEH · August 26

The above is what I s what was found to be offered in Nebraska. Please reach out to them....I think it might be really helpful. I looked also in Kansas for you. They seem to have similar support and maybe even a bit better. Let me know if you would like the Kansas information too I would be happy to forward it to you, just let me know. Hang in there.

geh

Nana99 · September 19

I am newly diagnosed with AD, and so far have no symptoms. I was not happy with the first neurologist I met with, and now I find myself hunting for a doctor who will understand and treat "me" and not just hand me a prescription. So...if you know any amazing doctors in Kansas please let me know.

Dneige89 · September 19

Hello. My first question is how were you diagnosed with AD? Did your primary care doctor order the PTau and EPOE lab tests for you? Did you have a PetScan? I ask because you said you have no symptoms. I made a trip to the Mayo Clinic after testing by my local neurologist. I have EPOE 3/3, a minimum PTau level and a low positive PetScan. The neurologist at the Mayo Clinic told me that people are getting the new lab tests for Alzheimer’s but they are not showing symptoms of AD, have low level test results, and do not need treatment. I encourage you to find a new neurologist or, if possible, go to one of the major medical clinics (Mayo, Cleveland, etc.) or university medical center. The diagnosis of AD is terrifying so take care of yourself in the meantime. Wishing you all the best🤗

drock57 · September 19

My initial diagnosis was MCI back in Decemer of 25. Having had a mother with alzheimers it had always been a concern. My sister is having similar concerns. However. its has not been determined that I "officially" have AD. Testing for APOE4 allele came up with 2 copies, homozygous, which is "associated with an increased risk of AD", Genetic testing for APP, PSEN1 and PSN2 were negative, which "decreases the likelihood of, but "is not sufficient to diagnose or exclude AD."

So those test basically just left me hanging. I haven't yet made any progress getting in with a neurologist or getting any treatment beyond the Memantine the family doctor prescibed. right now December is the soonist I can see a nuerologist. Also trying to get into clinics in Omaha an/or KC.

so how long does it take to get into care!!!

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