I’ve been looking at Ian Cook’s brilliant progMSezine, and noticed that there’s a drug Mayzent (siponimod) for cognitive problems, does anyone know about this drug, it’s still at a trial stage at the moment and is at stage 3 of this trial at present and is looking like there will be a positive outcome.
Wendy x
hi wendy
i am now used to having a word stuck on the tip of my tongue.
I can even laugh at it sometimes.
it would be great if the new drug helps.
Wendy, I so hope this comes to fruition. I get so frustrated and sometimes quite angry with myself when i can’t even remember the word for simple things. It gets embarrassing when people have to step in when I’m struggling to find the words.
Thanks for your replies lisasn and carole58
Yes it is very embarrassing especially when using the phone, sometimes I’m ok and other times I can’t string a sentence together. I’ve got a few friends (and an older brother) that are older than me and they are in the same boat but insist that it’s my age. I do worry about dementia, So I try to do crosswords and use a brain-trainer machine, they do help.
It is so annoying when we know it’s to do with our MS and some clever so and so say is just age and it happens to everyone!!
Tell them to Google MS and cognitive problems.
Best wishes
Jan x
I’ve had the most annoying reactions from doctors when I’ve mentioned my cognitive problems. Most recently, a junior doctor gave me a rough and ready psychological test (which I’ve done before). Because I have done the counting down from 100 in 7s so many times now, it is really easy for me. So the neurologist who arranged for the test just thinks I don’t have any cognitive problems. Yet I’ve had a full test by a psychologist and she wrote a report which is clearly showing that I do have cognitive deficits.
Why they never change the test I don’t know. Apparently the counting backward in 7s is the hardest number to use. But why they have to start at 100 every time I don’t get. Equally, name all the animals you can think of plus list all the words starting with the letter P! Why never change these?
It’s miserable not having a fully working brain. I know the neurologists don’t think being able to remember the plot of a book I read last week is important, or being able to follow a TV series. Equally, not being able to concentrate when there’s background noise or more than one person in a room. But when these ‘little’ things affect your life, it is important.
I do hope the new drug comes through the trials and becomes available before too much longer.
Sue
[quote=Janhhh]
It is so annoying when we know it’s to do with our MS and some clever so and so say is just age and it happens to everyone!!
Tell them to Google MS and cognitive problems.
Best wishes
Jan x
Thanks for the post Jan. I know they’re probably trying to put my mind at rest, I have several friends who have been sent to the mental health team and have been dx with Dementia, I’m not sure if this the right either. On some days I don’t think I’d pass those tests either!!
Wendy x
Thanks for your observations Sue, funnily enough I can remember numbers and could probably manage your tests, (I worked with numbers from the age of 16). Saying that, I often get frozen out whilst filling in forms on-line, as I’m too slow, very annoying!!!.
It’s remembering names and generally words that I have problems with. It doesn’t help that I’m trying to keep up with someone who is on the ball and my speech is so slow, it puts extra pressure on me. Computer is better, I have time to use Thesaurus when I get stuck.
I’m hoping we will be able to access this drug soon too. If not for me, for others with ms.
Wendy x
I have no major problems with speech when it’s one to one. Put more people in a room and my brain just freezes. Recently I had a couple of (thankfully good old) friends come to stay and on their first night while we were trying to make dinner (I direct while husband cooks) I had to suddenly shout, ‘will everyone please shut up?’ I just couldn’t think while several people were chatting, getting drinks, trying to help!! Luckily they obeyed, dinner was made and we managed to do chatting while my brain wasn’t required to do anything remotely sensible.
Typing onto a tablet is so much easier. If I can’t think of the word I want (frequently) I just substitute another, then read back what I’ve written and often the right word appears just like magic!
Sue
Sue, i so identify with what you just said. I’m exactly the same. Not sure I’d have the courage to tell everyone to be quiet though. Brain just shuts down and i veg out.
These particular friends are very good, old friends. They’re used to my being a tad dictatorial in the kitchen!! It works because the food we produce between my husband and myself is generally pretty good. So my telling everyone to shut up fits with what they expect of me. (Luckily they love me even with shoutiness and generally rudely issuing instructions!)
Sue