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Questions and discussion about monoclonal gammopathy of undetermined significance (i.e., diagnosis, risk of progression, living with the disease, etc.)

Cognitive / memory issues?

by Toni on Fri Feb 20, 2015 12:16 am

I haven't been on these forums for a while. Mostly because I forgot my sign in and password.

I was diagnosed with MGUS last spring and everything looks totally fine. A little osteopenia. No iron stores, low vitamin D. Not much different than any other 50 year old woman.

The MGUS seems to be stable. Even my immune system seems to be much better this year than last.

So, it's a long shot, but does this stuff ever affect people's ability to think, remember, function daily tasks?

Since November or maybe December of last year, I've been doing rather badly cognitively. I just saw my doctor on Monday and he thinks it's from the gabapentin I take for neuropathy and fibromyalgia pain. I think I increased it by 300 mg this fall for a total of 1200 mg daily.

I've always been able to think my way through things, but I can't right now.

Silly things, like not remembering how to get to the store, or forgetting a bag of groceries, or making pizza but cooking it without the cheese.

I saw my family doctor on Monday. Tomorrow I am to see a psychiatrist because I take escitalopram (Lexapro), which also helps with the fibromyalgia and depression. I follow up with the hematologist in two weeks for my 3-6 month check up.

I'm grasping at straws, but I figured it doesn't hurt to ask.

Thank you :-)

Toni
Name: Toni
Who do you know with myeloma?: self - MGUS
When were you/they diagnosed?: April 2014
Age at diagnosis: 51

Re: Cognitive / memory issues?

by Eric Hofacket on Fri Feb 20, 2015 2:13 pm

I have found that a lot of the drugs I have taken in the three years since I have been treated for myeloma have the side effect of clouding my thinking and cognitive abilities. I believe your doctor is right. Read up on the side effects of the drugs you are on and you will probably find they can affect memory and cognitive thinking. I would not consider forgetting how to get to the store, and making pizza without cheese, to be silly little things, but instead signs of significant cognitive impairment.

This is one of the reasons some time ago I started cutting out drugs I felt I could get by without and consider carefully each new prescription offered that is not essential. I found I could get by without some drugs but still take drugs that affect my memory.

My short-term memory is not very good. I have trouble remembering names, where I parked my car. Some days I have trouble concentrating on much, and other days are much better. When I have taken a break from Revlimid for more than two weeks, I can tell a difference. No doubt some of this is simply getting older too. I know my memory was far better in my 20s.

Eric Hofacket
Name: Eric H
When were you/they diagnosed?: 01 April 2011
Age at diagnosis: 44

Re: Cognitive / memory issues?

by Toni on Fri Feb 20, 2015 9:29 pm

Thank you Eric for your kind response.

I agree, being on multiple medications murks up the waters. Hard to get a clear picture. Trying to go off one and maybe add another.

In the meantime, the specialist I saw today is very concerned about early onset dementia and wants me to see a neurologist. That was at 7:30 this morning. I haven't heard from anyone since. No one moves very fast around here. Which is ok I guess. Like I said, pretty sure it's drug related or some form of dementia, but clearly needs further investigation.

And I agree, not silly. Very scary. Especially when you rely on your brain for almost everything.

Toni
Name: Toni
Who do you know with myeloma?: self - MGUS
When were you/they diagnosed?: April 2014
Age at diagnosis: 51

Re: Cognitive / memory issues?

by Cheryl G on Fri Feb 20, 2015 9:59 pm

Hello Toni,

I'm so sorry to hear about the problems you've been having.

I am far from an expert on these things, but the issues you have been having sound much more like medication-related problems than early-onset dementia. I also think you're correct to be thinking it could be the gabapentin. If I am not mistaken, it first was used as a medication for epilepsy, so it is designed to mess around with your brain!

Keep trying to figure out the source of the problem, and don't let your doctors convince you it is the start of dementia until you've definitely ruled out the medications you are taking or some other potential source of the problems.

Good luck!

Cheryl G

Re: Cognitive / memory issues?

by Toni on Sat Feb 21, 2015 11:00 pm

Thank you so much for the encouragement, Cheryl.

I'm starting to feel just a teeny bit better, and I started going off the gabapentin on Tuesday (need to do it gradually). I think you are right about the medication thing. I hope we can find some solutions.

Toni
Name: Toni
Who do you know with myeloma?: self - MGUS
When were you/they diagnosed?: April 2014
Age at diagnosis: 51

Re: Cognitive / memory issues?

by Carolee888 on Mon Feb 23, 2015 4:44 pm

I would encourage you to see a neurologist. That person can request a brain MRI, EEG etc. If there is any question about dementia, the neurologisist is the one to see.

Carolee888


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