Recent diagnosis

ChrisNichols

I am a 57 year old divorced father of 2 (16 and 12) and have recentley been diagnosed with mild cognitive imparement.   After having problems for some time, especially over the last several years, especially over the last calendar year I have been getting answers about my condition.   The diagnosis process has been absolutley  horrible.  I have had 2 neuropsych exams, and abnormal eeg that is still be investigated and for now the diagnosis is MCI, although the doctors still do not really understand my condition.   

I am looking for any clinic trials or resources.

Thanks

Chris

Iris L.

Welcome Chris, to this online support group.  Most doctors are unfamiliar with or unsure about MCI, so yours is not unusual.  The good thing about MCI is that it may not progress or even improve back to normal.  The bad thing about MCI is that it may progress to one of the dementias.  You may already know that Alzheimer's Disease is a "rule-out" diagnosis after all other possible dementia mimics have been searched for and ruled out.  For example, were you evaluated for sleep apnea? 

I wrote an extensive post about having an MCI diagnosis on the Spouse/Partner board.  I will bring it to the top for you.

Do you have questions?  Feel free to post them.

I have questions for you.  Are you still working?  How is that going?  Do the children live with you?  How is that going?

There are many things to consider with MCI, and there are many options.  There members here are knowledgeable.  You are not alone.

Iris L.

Melhodges

Hi. I’m mel. Just diagnosed with MCI. Just want to talk to others with the diagnosis. I understand that the rate is degrading to an Alzheimer’s or dementia are only 20 percent. I prefer to stand on the side of the 80 pct that do not degrade any further. Please reply. There is so much confusion.

Iris L.

Welcome, Mel.  I posted a thread about what to do after a diagnosis of MCI.  It is on the Spouse/Partner board, approximately October 2022.  

Please let us know more about you.  Are you still working?

Iris L.

Melhodges

I work part time and am retired.  Feel great. I truly don't know if I want to or should overreact to anything. I was recommended to take vitamin B12 shots for 12 weeks and some type of medication that I can't think of a name. I doubt I will take the medication at this point but I will do B12 shots. The main thing that I struggle with is the lack of concrete information as to whether this will increase or degrade or not. It's more stressful at this point than anything.

Melhodges

I cant find the thread  NP

EllisA

welcome Mel and Chris.  Hello again Iris. I have been here for just 2 years.  It is a great forum!!!  lot's of caring people and even some Great information.  My PCP prescribed to medications, I take regularly,  no side effects going on 2.5 years.  He has cared for me for 36 years so he understands me very well!!!!  Nice to have him in my corner.  Looking back my MCI started over 20 years ago.  very slowly progressing,  forgetfulness, like losing things and remembering names of people I had known for years,mood changes even personal behavior changes I don't like..  I retired nearly 4 years ago of my own choice, yet still active and somewhat socially active.

I have read that a PET scan, spinal tap and possibly blood draw can assist in "diagnosis."  A PET scan is really expensive, yet can show amoloyd plaque build i, the brain.  Yet none of that can alter the course of MCI.  I have decided to enjoy the time I have on this earth.  Not focus on this particular issue and manage all my other medical situations best I can with my PCP.  No I have not given up, just slowly learning to handle things in a different way.  I can't read and follow simple instructions which is really frustrating, I have lots to do.  I am still driving  "with caution",  If I or my family notice a downward change that will go away immediately.  I don't ever want to hurt someone.

Enough of me  keep searching for answers, I pray you will get some soon and that you will take control of your future.   EllisA

Iris L.

Hello, Ellis, and Happy New Year.  It's nice to know you are maintaining.  Keep up the good work.  If you want to get a PET scan and lumbar puncture, consider enrolling in  a clinical trial.  My own Amyvidd PET scan was obtained via a clinical trial.  Blood tests usually can be ordered by your PCP.  

Mel, if you are low in vitamin B12, that can affect your memory and cognition to a significant degree.  This is because some older adults over age 50 cannot absorb B12 from food or tablets through the gastrointestinal tract.  These people need to get injections, or perhaps sub-lingual (under the tongue) tabs.  Keep a close eye on your Vitamin B-12 level.  Also check to see if you have become anemic, because low B12 causes anemia.

The diagnosis of a dementia is a "rule-out" diagnosis.  This means after all other possible causes of memory loss have been ruled out.  This means checking for B12 deficiency and a lot of other nutritional or hormonal or metabolic problems.  Is there a history if head trauma?  Is there a history of major depression?  Many medications that older adults are prescribed cause memory loss as a side effect.  Sleep apnea causes memory loss.  All of this has to be checked out and treated.  

After treatment, if there is still memory loss, then MCI may be the diagnosis.  A diagnosis of dementia must include a significant DECLINE in memory snd cognition over time.  This is what the neurologist must monitor.   In my own case, my neurologist has determined that my memory loss snd other factors have remained essentially at the same level for all of these years.

No one can predict.  We have to treat co-morbidities, follow Best Practices, and wait and see.

Since you are working part-time, how are you functioning on your job?  Do you use work accommodations?

Iris

Iris L.

Mel, here is the address of "Regarding an MCI diagnosis" on the Spouse/Partner board.

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147562811

You will have to copy and paste because I cannot make a link.

I hope it can provide some guidance.

Iris

Melhodges

My B12 is very low and I expect to start injections.  However with me my HippoCampus area of my brain has shrunk significantly  (22%) in 6 years. I have a follow up in six months for another MRI and a second opinion scheduled.  My only symptoms are forgetfulness and my daughter says I occasionally repeat myself and I read that B12 can be the issue.

I was given 5 mg Donepezil, increasing to 10 mg in 30 days.  I have decided against that until after the second opinion and I want to see how B12 does. Taking meds without proven need is something I can't do.  This is why I am here talking to others in this situation.  I am told that the medication would not have been prescribed without cause but I need more.

At work I manage a small warehouse a couple days a week and am otherwise retired.  My issue there is the same, constantly misplacing things immediately.  

I understand that MCI is a rule out diagnosis but I have been formally diagnosed now which perplexes me.  Yes denial is part of the process and maybe this is it but I so not feel it and cant over react.  I have a group meeting today, firstone.  so maybe that will be good. 

Thanks Iris

Iris L.

Melhodges wrote:

My B12 is very low and I expect to start injections.  

Vitamin B12  deficiency is a serious condition.  While it is common in older adults due to loss of intrinsic factor, there are multiple causes,  including high alcohol use or certain drug side effects or a vegetarian diet.  I suggest that you read a lot about B12 deficiency and work with your doctor to determine your precise cause.  This will determine the treatment, which might be stopping a medication, dietary changes, or stopping alcohol.  

You need to know if you need to take B12 injections for the rest of your life.

However with me my HippoCampus area of my brain has shrunk significantly  (22%) in 6 years. I have a follow up in six months for another MRI and a second opinion scheduled.  

The hippocampus shrinks in all older adults, but I cannot say by how much for each age group.  Alzheimer's Disease is usually slowly progressing, and I don't know how much change would be significant after only six months.  For myself, I believe I went about three years between MRIs. 

Will the second opinion be with a neurologist who is a dementia specialist?  Not all neurologists specialize in the dementias, some specialize in multiple sclerosis or seizure disorders, for example.

My only symptoms are forgetfulness and my daughter says I occasionally repeat myself and I read that B12 can be the issue.

Have you had thorough, extensive neurocognitive testing done by a neuropsychologist?   This will quantify any deficits in different  areas of cognition.  Memory is only one area, and there are different types of memory.

I was given 5 mg Donepezil, increasing to 10 mg in 30 days.  I have decided against that until after the second opinion and I want to see how B12 does. Taking meds without proven need is something I can't do.  This is why I am here talking to others in this situation.  I am told that the medication would not have been prescribed without cause but I need more.

I agree with you here.  One condition should be thoroughly treated before beginning another treatment,  unless there are extenuating factors.  Otherwise, you will not know where the improvement is coming from.  Or if there is no improvement, why not?  

In my case, I was prescribed a trial of Exelon patch.  I held off for about three months, but finally decided to begin after a scare.  Within about three days, I noticed a positive response.  At my one month follow-up appointment, I asked for the full therapeutic dose, which I have been on ever since.  

 

At work I manage a small warehouse a couple days a week and am otherwise retired.  My issue there is the same, constantly misplacing things immediately.  

There is a government website which lists work accommodations.  You can look it over and see what accommodations might help you.  I will have to search for it and get back to you.  In the meantime, make sure you are getting enough sleep and limit or eliminate outside stresses.

Go to www.askjan.org and search for accommodations for Alzheimer's Disease. 

I understand that MCI is a rule out diagnosis but I have been formally diagnosed now which perplexes me.  

You have been diagnosed with MCI.  Overall, some will remain the same, some will reverse to normal, with treatment of the underlying condition, snd some will progress to one of the dementias.  It is horrible not knowing!  I was there.  Do the best you can to deal with possible co-morbidities.  Learn as much as you can.

Yes denial is part of the process and maybe this is it but I so not feel it and cant over react.  I have a group meeting today, firstone.  so maybe that will be good. 

Thanks Iris

Good luck with your group meeting.  What is "firstone"?

Iris

SusanMcc

I am 57 as well and I was diagnosed with dementia recently and it is hard for me as well, but try to hang in there. I just registered as well. I use a number of vitamins. I think you can sometimes prevent dementia from getting worse. I am not aware of any clinical trials.

Iris L.

Welcome Susan. How are you doing?

Iris

SusanMcc

Hi, Iris

I am doing fine. I am just learning this system.

My new Normal

Greetings Chris,

The road to a clear Dx is murky. My first MRI revealed a Dx of MCI. This was a no-brainer since my short-term memory was already showing significant signs something was wrong. From there, the path stagnated because the Dr. that ordered the first MRI wasn't my PC, so it took time to get the PC onboard that there was a problem with this. Eventually, I had an unannounced oral test. I say unannounced because I thought I was going for a check-up. I didn't get the grade my parents would have wanted back in the day.

After that, I was notified that my PC would put me on Aricept following a second MRI. Shabang, I still had deterioration of small blood vessels and the signs of MCI. I was put on Aricept and am still being tested to establish my baseline as I move forward.

Do your research, be informed, and live your life to the fullest.