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newby here with mci....help!
pigdog
Posted: Thursday, August 23, 2012 5:44 PM
Joined: 8/23/2012
Posts: 8


Just found this site and need to know there is someone else out there. I always make family or friends upset when I talk about what I am going through, but need to chat to someone sometimes. I am not able to work now as my memory is going but am only 43. Where I used to just get out and shop (retail therapy!) or just drive around to clear my head our income has dramatically decreased and that is not available anymore. Are the mood changes part of mci or is it a possible symptom of depression caused by mci? I cry at the drop of a hat anymore and get grouchy much more often also.
Iris L.
Posted: Thursday, August 23, 2012 6:11 PM
Joined: 12/15/2011
Posts: 17934


Welcome to our online support group, pigdog. 

Were you given a diagnosis of MCI from a qualified dementia neurologist after a thorough neurological evaluation including MRI and 6 hour neurocognitive testing? 

There are many diseases and conditons (thyroid disease, vitamin deficiency, drug side effects) that mimic dementia that are treatable if caught in time. 

Depression can cause "pseudo-dementia".

You are very young.  What type of treatment are you getting? 

Iris L.

Mimi S.
Posted: Thursday, August 23, 2012 7:20 PM
Joined: 11/29/2011
Posts: 7027


Hi Pigdig,

As a follow up to Iris's post, please have your librarian get you a copy of: The Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke University. It's a much better explanation of the disease. If this is not pretty much a description of the process you went through, then if you cannot find a University Hospital that has a dementia unit or a Memory Clinic in your area, do call the help line 1-800-272=3900 and ask.

From what you've written that is not MCI, by the usual definition.

Do, please, stay in touch!


pigdog
Posted: Thursday, August 23, 2012 8:30 PM
Joined: 8/23/2012
Posts: 8


Yes I do have a diagnosis after multiple tests including mri, eeg, and full neuro-psych testing. Yes I am young, but I forgot my cats name this morning, and I've had her for over 3 years. I am not sure where the line is drawn between mci and dementia. I have read over and over that dementia is where it affects daily life. I do forget things daily but was highly functioning before, so some people cannot tell there is a problem.
Mimi S.
Posted: Thursday, August 23, 2012 9:57 PM
Joined: 11/29/2011
Posts: 7027


Hi again,

I have a dispute with some doctors about how precise that line between MCI and AD is. One particular doctor says it's a science and the line is solid.
I feel it could vary from doctor to doctor since it's based partly on the neuro-psych. If you are at the cut line, you might get an answer wrong one day and be diagnosed AD. Or get the same answer correct and you're only MCI.
I can't recall if you are on meds or not. If not, I think I'd push meds just because of what you're forgetting. How long since your diagnosis?
You also want to seriously engage in Best Practices. I also take Omega 3 and some antioxidants.  Exercise vigorously!!!  Mediterranean diet. Get out, socialize. Work your brain.
Also think about depression meds. It is a blow to find out at your age. The depression meds may be only temporary.
I'd ask the help line for the number of you local Alz. chapter. Call and do get to know them. Ask if they know of a social worker, familiar with Early Onset AD, to whom you can talk. Some chapters have such a person on staff. Also ask if they have an Early Stage Group. Don't worry about your diagnosis. Even if you are MCI, our problems are quite similar.
And do keep coming here.

Iris L.
Posted: Thursday, August 23, 2012 10:37 PM
Joined: 12/15/2011
Posts: 17934


Pigdog, we do have members here diagnosed as MCI.  This is good, because the chances are high that you will not develop Alzheimer's disease.  Some patients revert back to normal functioning, and some remain at the same level of functioning indefinitely.  Some do go on to progress into Alzheimer's disease. 

We have members who were diagnosed in their late thirties and forties.  Personally, I developed severe memory loss at age 37.  Today I am 62 years.  My diagnosis is cognitive impairment nos (not otherwise specified).  The neurologist believes the impairment is due to complications of systemic lupus involving the brain.  I have been prescribed Exelon patch and Namenda, which have helped my functioning a great deal.

Do not stress yourself over small lapses in memory, such as forgetting your cat's name.  That happens to all of us.  Look for patterns of memory loss, such as not being able to cook and follow a recipe, or having more difficulty in handling your finances and checking account.  

Since you are not working, how are you supporting yourself?  Have you applied for SSDI?

Iris L.

pigdog
Posted: Friday, August 24, 2012 7:23 AM
Joined: 8/23/2012
Posts: 8


I am on exelon patches (samples) currently and a ton of other meds as I also have Crohns disease since age 15. Exelon is not covered by my insurance.   I am currently on short term disability through my work. It sucks though, because I had dropped my hours down to 30 to stay full time for the benefits and see if decreased stress would help. In less than a month my company will "separate" me and I will go on COBRA insurance which will be over $1200 per month. Let me see, insurance $1200/month, mortgage $1200/month, all my $ gone. Husband just went back to school to try to get better job as I was the major breadwinner. Stress, no I have nothing to be stressed about!  I also got off the elevator the other day and could not understand the arrows telling me to go left or right. After 6 yrs of college this totally freaks me out.
Iris L.
Posted: Friday, August 24, 2012 1:28 PM
Joined: 12/15/2011
Posts: 17934


What dosage of Exelon patch are you on?  Exelon should be covered by insurance.  I began Exelon 4.6 for one month, then went to 9.5.  I noticed an improvement in my memory and word finding quickly. 

Also other people noticed I was speaking better and communicating better.  Please give the Exelon a chance.  I am also on Namenda, with good results.

You will need to go back to the neurologist to get a prescription after the samples run out.  Do you have another appointment?

Does your company have a long term disability policy?  Check that out immediately.  My long term disability from my company includes full medical and dental insurance without extra charge.

The main web page, alz.org, has good information for people with MCI/EOAD.  Have you read it? 

Since you are on several medications, be sure all of them have been checked for memory and cognitive side effects.  Sometimes this is overlooked.

Why is your company "separating" you?  Is it because of your job performance?  If you cannot work due to your cognitive disability, you should be on disability, not get fired.

Iris L. 

Myriam
Posted: Friday, August 24, 2012 1:33 PM
Joined: 12/6/2011
Posts: 3326


pigdog, please call the Alz Assn at 800-272-3900.  I understand that some pharmacutical companies provide discounts. The Alz Assn may also have other/better information on how to get/pay for your needed prescriptions.