Dementia

[Turtlebay]

I saw my neuro about my cog fog issues. He is now calling my problems "dementia". He is very concerned because I don't have the amount of lesions that would be expected to have the "issues" that I am having. He put me on Namenda, I'm already on Aricept. He's not sure it will help but wanted me to give it a try. He's referring me for a Neuro-psych. eval. and referring me to UCSF. I appreciated when he told me that he didn't know what to think and wanted assistance in determining a course of action. Needless to say, I'm having a tough time with this. It was much easier to deal with when it was cog. fog. not dementia. I know it is just semantics but... My DH is great support. Any thoughts?

[Sequoia]

There's no such thing as "just semantics"...your doctor should know that!

Here's what the NMSS says about cognitive function:

http://www.nationalmssociety.org/abo...ion/index.aspx

"Cognitive changes are common in people with MS—approximately 50% of people with MS will develop problems with cognition."

"Only 5-10% of persons with MS develop problems severe enough to interfere significantly with everyday activities."

It's only the latter category, the 5-10%, that can properly be called dementia...and you're nowhere near that. "Cog fog" is still the best way to describe, and think of, what you're experiencing.

Referring you to a specialist for further evaluation makes sense. Scaring you by using the term "dementia" was uncalled for and unkind.

[SNOOPY]

Turtlebay,

Have you or any of your doctors looked at the medication(s) you may be taking? Some can cause cognitive problems.

I was on a statin for approximately a year and a half. My cognitive problems became quite scary and serious. I had pretty much given up driving and really didn't leave the house...everything felt overwhelming and I was no longer the person I once was.

My neuro scheduled a neruopsych evaluation.

Since this occured I did some reseach into statins and found memory problems and other side effects I was having. I stopped the statin and within about 2 weeks started to see quite a bit of improvement.

I don't know what medications, if any, you take...it was just a thought. Take care

[Turtlebay]

Thanks for the hope.

Sequoia, thanks for the info.
Snoopy, I will definitely look into the side effects of my meds.
Both of your kind words gave me reassurance and hope. Of all of the things that MS could rob me of just the thought of not recognizing my husband and sons is absolutely terrifying.

[Guzzy]

Hi Turtlebay
I can understand your fear.
I saw my neuro today for the first time in a year and I found out Lyrica is making my cog-fog markedly worse, according to him, and he wants me to stop it immediately for another drug. I took Elavil in the past too and it also had a negative effect on my memory, mood and concentration. I am/was on very low doses of these meds so I can't imagine how bad I'd be if it were any higher.

I hope things work out better for you.

[Jules A]

There's no such thing as "just semantics"...your doctor should know that!

Referring you to a specialist for further evaluation makes sense. Scaring you by using the term "dementia" was uncalled for and unkind.

So was he supposed to candy coat his assessment? There are criteria for different terminology and I would imagine he felt she met the criteria or wouldn't have used that term and it has nothing to do with being unkind or uncalled for.

I agree that it is prudent to have a specialist consult and there isn't a need to get totally freaked out at this point but don't see any reason he shouldn't have been honest with his thoughts.

Personally I'm sick of the physicians that don't have the stones to tell us the truth.

[asiel1]

I too have cog fog as it's called on this forum. The correct medical term is Mild cognitive impairment. I have also had a neuro who said i did not have MS tell me that I had "early dementia". He was promptly fired.

I am now at a teaching hospital and told I do not have dementia, just cog fog and memory issues. This doc told me I had Frontotemporal Dementia, but not dementia.. If that makes any sense. He was able to determine this without a petscan which is necessary for this diagnosis.

Only thing, rare to have physical symptoms with FTD, or dementia til much later in the disease.

My advice find a specialist who deals with Mild cognitive impairment and dementias every day. I am certain that they will tell you the opposite.

I am convinced many neuros are overwhelmed with all the varying degrees of neurological ailments. Since mild cognitive impairment is seen early in many dementias it is easy for mis diagnosis by a doc who gets caught up in the latest and greatest meds and probable outcomes of our cog fog. Unfortunately for them, my cog fog has not changed for seven years. It always does with these other outcomes, usually very rapidly.

It is my hope we both find someone who can finally make up their minds.

Much love.
LBJ

[Turtlebay]

Update

My referral to UCSF has gone through. My case is in"committee" to determine which nuero I should see. Hopefully, I will hear next week who and when my appointment will be. Patience is not one of my "virtues". I deal with thing much better when I know what I'm up against.
Thanks for caring.