Long Term Memory Losses?

[pennstater]

Hi All,

I am usually not an anxious person, but am feeling it now. I have a new neurologist for first time since diagnosis. My 2 year review for LTD is coming up and have been waiting 16 mos for SSDI ALJ hearing. Met with the neuropsych who did my testing 3 times before. Each time, IQ stayed within 2 points and deficits jump around. They used that to show fatigability aspect, but new neuro said that can happen with healthy people. I present physically normal, low EDSS score, some weakness right side, balance issues, etc..

My problem, I have long had issues with long term memory, in some cases, as both neuro and neuropsych put it amnesiac. Recent loss of memory: visited a foreign country in early 2001 to help a friend after sudden loss of husband and recent birth of 2nd child. I told my husband about it in 2009 when she came to visit. She was just in and mentioned the trip. I went along with it, but then told my husband and got really upset.

Docs agree the problems I have will not show up on cognitive testing. Things get to long term memory, but then I can't retrieve them. And the memory can be lost after a few days, weeks, months, or even years. I used to compensate when working by extra hours, and when I couldn't do the extra time due to MS, the holes showed. This started in 1993 when I had a weird 15 minute episode of confusion (new who I was, not sure who coworkers were, where I was, or how to find the bathroom). This was then followed by headaches ,nausea ,and vertigo for weeks, along with focus and memory issues that never resolved. Tested for seizures,stroke, you name it. MRI clean. Now they say, most likely MS.

I have to talk to neuro on Monday. Neuropsych said possibly testing with a forensic neuropsych (familiar with disability), if he draws same conclusion as prior testing may help as 2nd opinion. I have low brain lesion load. Said to talk to neuro, maybe functional MRI, but while accepted for stroke, cancer, still controversial with MS. And to top it off, the test using dominant hand and while I write with left, everything else with right.

If you read this far thanks.

1. Does anyone else have issues like this? How do you deal with it? Looking at pictures even doesn't invoke memories of events or trips.
2. Has anyone had a functional MRI and how did the results get used?
3. Has anyone worked with a forensic neuropsych and did it make a difference?
4. What type of work can someone do when things disappear from memory?

Thanks for any help.

[22cyclist]

Kathy,

I too have fits of long term memory loss that just drives me crazy. True that it won't show on most cognitive testing. I still go disability. A lot goes into it. Not just your Cog testing, but your urinary testing, your MRIs, your neurologists opinion (so ask them).

I had to stop because of cognitive issues, balance issues, and walking problems all together.

By the way, I was a nurse. Few lesions does not always equal small disability.

Good luck

Take care
Lisa

[KatieAgain]

Long Term Memory loss is scary. I think it is sort of rare. But anything is possible with this disease.

I have forgotten many things, but once reminded the memory comes back. So if you truly don't remember that trip...further investigation needs to be done.

If you have an opportunity to meet with a Forensic Neuro Psyc...I would certainly take advantage of that.

As far as disability...I have VA Disability vs. SSDI. I don't think any of the disability programs are "user friendly". A bunch of red tape. I think anxiety is very normal when going through this process. Eventually...the majority of us work our way through it and it turns out O.K. I feel sorry for those that get beaten and bruised by the system.

I hope it all works out for you the first time.

[pennstater]

Lisa - thanks for letting me know I am not alone. Both neuro and neuropsych told me not a usual manifestation for MS. But said it is possible that brain is damaged in area where trying to retrieve memory from. But with me, brain scan hasn't changed between 2009 and 2015, so how did I retrieve it in 2009 and not now? So frustrating. Praying disability comes thru, LTD definition changes from my occupation to any occupation soon. Think they agree I can't do my job, but may tell me I could be a movie ticket taker, which is what SSDI told me.

Katie - thanks for your thoughts. It is scary. I upset my husband, but there is no way I am going to turn him into my caretaker if my long term memory failure escalates and progresses. While the movie 50 First Dates was cute, we won't be living it. He is so caring and giving (I am blessed). But I refuse to become either a financial or emotional burden for him...he has worked too hard and should be able to enjoy his retirement in about 5 years.

Thanks for the support.

[Thinkimjob]

More short term memory, in my case. Keys? Oh where, oh where could they be? Search the whole house, which sucks when walking, well sucks. Did I leave them in the car? Stagger out, check, nope. Stagger back in, getting increasingly tired and anxious, and oops there they are, where I put them, so I'd be able to find them.

A movie ticket taker? Dear lord.

Pennstater, your husband loves you. And though we've never met, and we probably never will meet, I truly care about you. You are always kind in your posts.

My friend's husband did what he thought was best for both of them last week, and her heart is utterly broken.

[hunterd]

Kathy, if any, neurologist, EVER said to methat "healthy" people deal with fatigue issues like we do, that would be the last time I went to that neurologist! That absolutely riles me up! I had to retire from working because of fatigue issues and mobility issues, not memory issues. If I had the memory than that I do now. I would be forced to retire.

PS – on a different issue that has nothing to do with MS, when did you go to Penn State? I was at Maine campus in 1986 – 1987. I eventually quit because I did not like my major and it was too late ( moneywise) two switch majors.

[pennstater]

Thanks Think. I hope we do meet someday, as that would mean I went on my dream vacation. That would be your country! Of course, I may not remember later, but I know I would have enjoyed it.

I hear you on misplacing things. I put cards and presents in "safe" spots ahead of time. So safe I can't even find them later. Hubbie found a Xmas present from 2013 2 months ago. Lost my keys yesterday again, emptied my purse three times...where were they, in my purse.

As far as my husband, he makes me laugh. He later told me we will talk about if and when it worsens, but by then, I may not remember...he is so bad. But knew it would make me laugh.

Thanks for your kind words.

[pennstater]

Hunterd - my nephew just had a baby boy - named him Hunter! As for PSU, I was at main 1981-1985, little before your time. But was up there on some game weekends when you were there.

As for neuro, he wasn't saying that fatigue in healthy people is the same as MS, just that the insurance co. can use the argument that since IQ same, the fact that deficits jumped around each time I took it would be that in healthy brains, same thing can happen if take tests when tired. Our argument is that I am always tired! Sucks that MS Fatigue causes so many issues and forces us into early retirement. I do miss working.

Thanks again