It's about Memory or lack of it....

[anon07072023]

Hello my peeps. Sorry I've been MIA - but those of you who know me, know the multiple medical reasons why.

Anywho, I went to my neuro again today (now I see her every 2-3 months instead of every month). I had told her that my primary sent me for another neuropsych eval because of the issues I told her I was having. I had the testing at the University about 3 wks ago & won't get the final results until the 18th. I did notice when I had the follow up testing that they said they were going to give me X amount of tests.  Then after those tests, he stepped out to go talk with another doctor. He came back in and said they wanted to do more testing. I feels like I bombed the testing compared to last time.

I told my neuro today all of my symptoms/issues & she looked very concerned. She did a mini neuro/cognitive eval and said this may be something more than MS. Now she has prescribed Namenda XR for me. I googled it and it says it's for Alzheimers. I do have family that have/had dementia/Alzheimers. Does anyone else with MS take this???  Or do you know anyone with MS that takes it? From what I read, it makes symptoms worse with people who have MS. Sad face...  :-(    

[supermum_ms]

Well you'd think your dr(s) would know if not 'all' the research on the medications they prescribe, then at least the major stuff, though from my families experience here in OZ, they generally don't double check medications for known common to rare side effects, other med negative interactions etc before prescribing or additionally prescribing.  

EG our youngest was prescribed Tofranol (sp) for anxiety, after he started taking the medication his anxiety dramatically increased, he started having what we were told were panic attacks but we now know were reactions and over the years he was on it he went from being in the 97 to the 15 percentile. It was explained as his anxiety and because i'm very small he was just small but i still kept asking if it the medication could cause any of it.......numerous dr's said it was impossible, and i had to accept he was small, with high anxiety causing him daily panic attacks.  

Hmmm impossible? funny how he's never had one of those supposed panic attacks after he stopped taking it, and he's almost as tall as his dad and still growing. Everything i had brought to his various dr's attention, turned out to be documented side affects of the medication he was prescribed, even stalled/stunted growth was a research based fact and therefore not impossible at all. We have a few too many medical reactions to discount it as a possibility, so i do think it doesn't hurt to get your meds checked out.

Honestly i'm not surprised there is concern over your cognitive decline, is this resent (?) because i remember you did have some cog issues but this all sounds quite different and would seem more in the realm of Dementia-Alzheimer’s cognitive issues. Correct me if i'm wrong here but i'd think you are way too young to be prescribed this type of med and before all other options! Getting to the nut and gritty of the cognitive areas effected, what is or has caused it and immediate OT brain training etc would be the before steps i'd be taking, i'd really need the answers to the important questions because if its  big deal stuff you need to know!

Hugs.........JJ  

[anon07072023]

Thanks everyone.

JJ, I did find the same study as you when I did a search for MS and Namenda XR. There are several studies that show negative results with people with MS.  The symptoms for ones with MS are worsening symptoms.  The neuros know which medications that I'm on, so they should be able to tell if one of them would cause increases in symptoms or new issues.  

Besides the usual cognitive stuff, I'm getting disoriented when I drive - either don't know where I am, or start to think I'm back in WA, where I lived in HS & early 20s and then can't figure out how to get where I'm going.  I'm also not thinking right - like want to say it's June or Dec, instead of the month we're in. And at the beginning of Oct, I was thinking it was zero(0) Oct, instead of 1 Oct. And I see shadows that seem to be coming across, like someone is coming up behind me and it makes the hair on the back of my neck stand up. Forgetting that I'm cooking, and leave the stove on and having really vivid dreams. These are some of the strange things going on with me.

[PastorDan]

Ditto to the f3elings expressed above.  This gang of fine folks are more supportive than they realize.

Lost my mom to early-onset Alzheimer's, back before it was known outside neuro circles.  There were no meds to try back then.  I am happy to see so much more understanding nowadays, as well as ongoing research.

Whatever is the cause, I will pray it is found and fixed.  Keep us informed when you can, please.

[supermum_ms]

Hey Kelly, nice to see you, though the reason su_cks!

I've not heard of anyone or remember lol seeing it mentioned here, so i did a quick search and drugs .com states...... "In a trial testing the use of memantine (the active ingredient contained in Namenda XR) in MS patients with cognitive impairment, nine out of nineteen patients reported a worsening of their neurologic symptoms that deteriorated their quality of life. After stopping the medication, the patients reverted to their baseline disability within a few days."

http://mymsaa.org/PDFs/MSAA.Motivator.Winter.Spring.2013.pdf

".......Although early reports suggested that the medication Aricept (donepezil) might help cognition in MS, more thorough study has not proven this drug to be of benefit. Additional studies of the Alzheimer’s medications Exelon® (rivastigmine) and Namenda® (memantine HCl) also did not demonstrate a clear benefit. Some side effects may include stomachor bowel problems, mood changes, and urinary difficulty......"

Note: Very interesting section on cognitive issues is found about half way down, well worth reading for tips and tricks, medications etc.

I know i sound like a broken record, but have you looked if there are any cognitive side effects of the medications you take, sometimes something will exacerbate an issue and changing a medication is better than adding another, to me its definitely worth looking into the possibility at least.

Hugs............JJ

PS dont be a stranger :o)  

[cubbiesfan918]

I see why you have cause for fear and concern. I will keep you close to my heart, please keep us posted.

Warm thoughts,
Lizzie

[cubbiesfan918]

Kelly~

My heart goes out to you right now.  I am sorry to hear this. I will keep you in my thoughts! I want to say dont worry about the what ifs as they may never become; however, I