Last reply 8 months ago
Even more confused

Hi, I’ve been diagnosed with MS since February. A letter from the hospital says it’s mild MS. Probably is too, I have no pain and have no real mobility issues apart from dizziness.
My real issue is my brain. I haven’t felt fully myself since my relapse. I call it my hole in the head. Can’t concentrate, can’t make plans, couldn’t read for a few months, still have difficulties with that when fatigued.
I told my neurologist all this on my first visit. He didn’t seem too worried, and reckoned I’d be fine after about a year. Fair enough, I’ll soldier on.
Had a second visit the other day. My neurologist seemed surprised I was having these difficulties. I said, I’ve told you all this before… I mentioned the year to feel better comment from last time, and that seemed to be brushed over hurriedly. He then said, well there’s nothing on your scans to suggest you should be having these problems! So I’m going back in 6 months and I might have an MRI then if I’m still having problems.
I’m well pissed off, to put it mildly. I mean, why wasn’t I told on the first visit my scans didn’t indicate problems? Why was the year to get better not really talked about? I’m aware my physical problems are relatively minor, but my head problems definitely aren’t (in my opinion) I don’t drive, but I wouldn’t consider myself safe to drive, I am literally a danger to myself crossing the road, never mind driving on it.
Sorry for the rant, I have no idea what to do next. Do I just grin and bear it or see someone else?

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poojapurohit
9 months ago

Hi, I’ve been diagnosed with MS for nearly 3 years now. I can say my first year was the most difficult aswell with ‘brain issues’ and little physical difficulties. I think for me it helped learning what I struggle with and how to tackle them myself. For example my memory isn’t as good anymore so I leave little notes for myself as a reminder. I also struggle with concentration. So I tend to make sure I take regular breaks, have naps and take my time to complete tasks. I feel this allows me to do my work correctly. I hope these suggestions may help 😊


hetz
9 months ago

I can see myself having to do the same as you.

I think what I’m really kicking off about is the seeming lack of concern with my head issues.
Maybe I’m overreacting? No clue.

But thanks for reading my rant anyway. Your ms sounds similar to mine, thanks for the tips 😀


poojapurohit
9 months ago

You are not overreacting, it’s normal to be angry if no one is taking interest or doing anything about any suffering.
I can say everything is alright in the end. Maybe your body is taking a bit of time to adjust to the MS.


Anonymous
9 months ago

Hi @hetz people associate MS with physical problems/disability but there can be cognitive problems too (see link below)

https://www.mssociety.org.uk/what-is-ms/signs-and-symptoms/memory-and-thinking/cognitive-problems

As with everything MS Plays such a huge part in how bad symptoms are, so it’s important to test
As much as possible, especially if the symptoms become worse. I was diagnosed in 2000 & it’s only the last year or so that my cognition has been affected & I know it can be so frustrating. I’m surprised your neurologist said he’d expect these issues to improve in a year as MS doesn’t really work like that. do you have an MS nurse yet? They’re invaluable in treating MS, they’re usually a phone call away & can liaise with your neurologist if there’s an issue they can’t help you with. It’s also useful to keep your GP informed of any problems. I hope this helps in some way & you never need to apologise for a rant! Everyone on here has experienced various MS related issues & will gladly help you 😉


hetz
9 months ago

Cheers guys 😀 Yeah, I mean i am still adjusting to the MS, still learning what I can.
But I am improving. My head is much better now than it was 2 months ago for example. So, I had no reason to disbelieve his year timetable. I wasn’t expecting to be all better after 365 days or anything, but I seemed to be progressing and it was a goal to aim for.
I really wouldn’t expect much sympathy from my MS nurse. She laughed when I said I couldn’t read. Not really sure I’d get anywhere there.


Anonymous
9 months ago

@hetz thats rubbish from the MS nurse. You should talk with with reception in the neurology outpatient l department to see if there’s a different nurse (there’s usually more than one). You are in the early stages of getting to know how your MS affects you, but over time you will & you’ll notice the ‘triggers’ to not feeling so good & how to avoid/manage them. Have you been started ion any meds yet. There are ‘disease modifying’ drugs that can slow the MS progression & it would be good to get on one of these (there are a few types) as soon as possible

https://www.mssociety.org.uk/dmts


vixen
9 months ago

Hello @hetz, sorry you’re going through this. I’ve been diagnosed since Jan but fortunately had great care. From what you’ve written, it comes across as that your neuro doesn’t specialise in MS. I’ve never heard of anyone putting possible timelines on recovery. One thing I found really helped with the old cog fog; that was to keep playing a repetitive word game on my tablet. It really kept me focused and more alert. I began to see patterns, like I was getting higher scores in the mornings. Now of corse, I’m an addict but that’s a whole other story……..! 🙂


nutshell88
9 months ago

Hello,
I was daignosed 13 yrs ago I felt how you’re feeling now. Last couple of years of university 2010/11.
You might not have these lesions. in couple of yrs yh long time or even in a shorter time the nerves get fixed. Better not rush them with steroids yet. I had them too 2010 2011 but not a sign of dizzsniss now just try not to turn ur head quick left right up or down try to focus at something small two meters away while lying down and keep staring at it and count to 10 do this few times. Per a week.
If u got dizzy doing it no worries train the nerve basically.
Ask ur neuro before doing it tho.

I hope you get better asap

Have a goodnight
R


bok2bjan
9 months ago

Wow – I’m upset just reading your post!! That’s ridiculous to say you have a “mild” case first of all, and to say he can’t SEE the problems you’re having on the scan???? Oh my word! I think you need an MS specialist because that neuro doesn’t seem to understand MS at all.

Lol – you can tell that riled me up!


velvet2623
8 months ago

sorry to hear about all the issues. It makes me upset to hear when doctors don’t listen. Please switch your doctors until you find someone that will listen to you and how you’re feeling. Your health is no joke and this doctor is putting your future at risk because he can’t “see” the issue. Which again tells you all you need to know about the kind of doctor he is.

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