No diagnosis yet...worried.

Laurany152

Hello everyone,

I am posting again to this wonderful community that helped me through my mom's Dementia until she died about 5 an a half years ago. 

Now I am noticing some things about myself that is worrying me. I find myself being much more forgetful. Now I've always been a little forgetful, but I was always able to find whatever was lost. Only now I am noticing that I can't do it anymore and it takes the entire family to help me find what I lost. I also notice that communicating with my family or anyone is becoming difficult. I am forgetting words. It's like I know what I want to say but I just can't do it and so I usually just say forget it because I don't want them to know. I mean how can I forget words? plus I am saying weird things to people in social situations. It's embarrassing. I was at a Christmas party a few weeks ago and I couldn't talk. I smiled and everything but stayed close to my hubby because I was afraid of what I would say that was the wrong thing to say. I have never had so much trouble talking to someone. I am going to the Doctor in January I was hoping you wonderful people would tell me what to expect.

Michael Ellenbogen

 Start by getting all the test as its not always dementia and a lot can be reversed. The good news is that as Of today there are a few dugs coming out that can slow it down about 3 years.

EllisA

discuss your thoughts openly with your doctor.  You will get lots of questions, and memory challenges that will help asses your status. A thorough physical including a review of all medications and otc supplements you consume will be evaluated,  take a list if you can.  I also suggest you take a written list of your questions and concerns,  that way you won't leave the office with unanswered concerns.  It would be great to have your Spouse or friend go with you so they can listen and note the discussion.  You might expect an scan or MRI to assist in a complete medical assessment. Great non invasive tests.  God Bless you as you move ahead towards this event and the new year challenges.  Stay positive, active and safe.

Thank you for checking here, this is a great resource and place of comfort!!!!!!  My prayers will be with you and your medical team!!!!!!!!!!!!!!!!!!!

babyface68

Hello i will be praying for you.  I am only 54 years old. A year ago i passed out in a hotel.  They thought i was having a stroke.  A tia. They ran all these test. They did a mri and ran other tests.  I stayed there for 2 days.  They told me to follow up with my doctor because of covid i never did. When i went to my doctor this month he said my mri showed vascular dementia.  I was devastated no one told me to a year later.  Why. He didn't refer me to anyone.  Just for a sleep study.  I sm forgetting things and my words are not right.  Please get checked out. They said mine came from high blood pressure which i was taken medicine for.

Gabbycam

Hi - I am 58 and and have been working through many of the same issues that you are dealing with now. It's really hard, I'm sorry that you are going through this. I know for me not being able to do the things that are supposed to be easy can be frustrating and at times embarrassing.

It is definitely not a one size fits all but I am happy to share a bit of what my experience has been. My mom passed away in 2019 from AD - she had an early onset diagnosis. I became more concerned about my own memory - I was losing things, having a terrible time with recall and could not perform my job which is very demanding. My PCP sent me to a neuropsychologist and I completed a set of neurological tests and was told I do NOT have ALZ. I knew that something was wrong but could not get my PCP to listen. I live in NH and worked with Mass General Hospital for a second opinion. Here was the process for me
- Neurological testing (memory tests)
- MRI (mostly to rule out other conditions)
- Full blood work (metabolic panel, CBC differential) - to review overall health to rule out other possible conditions
- Apolipoprotein E genotype - This is a genetic test (they included it in the bloodwork) that can help determine if you are at risk (I have the ALZ gene - APOE e4 from both parents which increases my risk substantially)
- Lumbar Puncture (I am scheduled for a lumbar puncture which can determine if amyloid is present in my brain which will confirm my diagnosis.)

Definitely start with your PCP and get the right team to help you through. I am brand new to this group and I am hopeful that it will be a blessing as I work through this journey.

God bless

Iris L.

Welcome gabbycam. In addition to the above evaluations, condider getting an overnight sleep study at a hospital Sleep Lab. This will determine if you have central or obstructive sleep apnea, which can be a cause of significant memory loss and cognitive impairment.

Iris

TroyH9

I am 55 and have EO and the best advice I can give you is be YOUR OWN ADVOCATE. DO NOT give up until you get a answer. You might have to go through a lot of different test but listen to your body especially if you are younger than 65. I have OSA and they were telling me that was the reason because I have had OSA for so long. But do get checked for sleep apnea or vitamin deficiencies. I pray that is all it is for you and everything will be great. Some test I had were all day memory cognitive testing, Amyloid pet scan, brain metabolic pet scan. I wish you the best and please keep in contact