Last reply 4 months ago
Vision/Dizzy

Has anyone felt dizzy light headed and vision slightly off which lasted a few months then got better without steroids?,when I say off cn be slightly doubled and images nt as sharp , I can have a good couple of days then its off a good day then bad drivin me nuts wondering if it will improve again lol x

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tomsoshi
4 months ago

i get that a lot (especially the vision) – actually optical neuritis was my first symptom . Do you find it’s worse when you’re tired or exposed to heat ? have you talked to your neuro about it ?


melmel1
4 months ago

@tomsoshi Im wondering if it is tiredness because I am tired yes heat makes me funny ive knowticed too, ive told the ms nurse about it before and because im not on my knees she wnt give me steroids, how long has your optic neuritis lasted for?, Im a.massage therapist the job is very physical is it wise to do a physical job witb ms?, thank you for your reply x


tomsoshi
4 months ago

i live in singapore so heat is a constant issue! Ironically we are well prepared with air con everywhere so easy to escape

The optic neuritis itself was accute for only a couple of weeks – couldn’t see out of the top half of one eye – but apart from that my vision was blurry and double – vision. recovered on its own without steroids . But i still get bad focus periodically but it comes and goes and isn’t severe

I’m no expert on this but a physical job sounds beneficial unless you’re getting too tired or your symptoms are flaring.


melmel1
4 months ago

@tomsoshi yes i did have tht 10 years ago terrible optic neuritis that lasted 2 weeks then nothing till now were this is more milder but lasting a lot longer, I have gained quite a bit of weight too recently,how r u doing with your ms?,was you born in singapore or moved there for workx


tomsoshi
4 months ago

moved here for work 7 years ago , was diagnosed 5 years back – british originally ..

i’m ok with it – no acute flare ups so far – but the tiredness and vision probsbly affect me the most , as well as foggy thinking (which could also be getting old.. :-)) Rebif still makes me tired and occasionally flu like so i’m thinking of switching .

weight loss should help , i need to try that as well haha

What meds are you on? do you find your vision is worse after taking them (or the next day ?)


melmel1
4 months ago

@tomsoshi well I was diagnosed with ms by a general neurologist a few months ago and now the ms neuro ive just seen wants a repeat mri lumber punc? And eye evoked test lol so god know what hes tinking so im not on any meds of yet but reckon ive had this at least 10 yeats min, lol ive been comfort eating but i got to stop now lol, I heard singpore is a very intresting place x


peterfrancis
4 months ago

@melmel1

Yes, the whole dizziness and vision problems issue is something I put up with intermittently on a daily basis, yes it is annoying and frustrating to say the least.


tomsoshi
4 months ago

it’s pretty nice but hot !

I find it difficult to comprehend how long diagnosis seems to take . I saw recently even Selma Blair took many years to be diagnosed , and presumably she had access to some good specialists .

My case, i had the neuritis thing , then about six months later a banding around my middle (like ms hug). Evoked potential, mri but no lumbar . And tests to rule out things like lyme . The. straight onto Rebif . Second opinion in london to confirm it (for insurance)

I guess i was “lucky” to have the second episode quite quickly so that qualifies for the disseroation in time & space criteria


tomsoshi
4 months ago

disseminate*


melmel1
4 months ago

@peterfrancis it is soo frustrating someone told me about those vertigo videos on youtube there exercises u do with ur eyes and head there supposed to help im not sure have you tried it?


melmel1
4 months ago

@tomsoshi I heard ms.is difficult to diagnose how long do you reckon you have had it for? X


tomsoshi
4 months ago

indeed it is difficult . Mri probsbly the best indication along with ruling everything else out.

i’m not sure sure in my case. Hard to pin down any specific episodes before the neuritis which had me and my first neuro suspecting Ms on the first day! o


peterfrancis
4 months ago

@melmel1

Not tried them no, will have to give them a look.


nutshell88
4 months ago

I’ve had double vision over 5 times
Never had steroids for it
Maybe i did 1 time maybe not


melmel1
4 months ago

@nutshell88 whats the longest it has lasted for?


nutshell88
4 months ago

3 weeks


mlgilber1
4 months ago

If the vertigo is super bad there is a medication they can prescribe, not sure of the name, but my nurse told me it’s very similar to over the counter motion sickness meds. Sometimes mine was so bad I couldn’t even walk.


mlgilber1
4 months ago

Also, I’ve never had steroids just for it unless there were other symptoms that suggested a relapse. It always went away eventually. Sometimes it took days and sometimes months.


melmel1
4 months ago

@mlgilber1 thank you for reply I feel like its been goin on 3 months mow, have u felt better since been put on ur DMD’s? X


nutshell88
4 months ago

@mlgilber1
I couldnt walk too it was a niggtmare I kept falling on my knees
It was in 2010
I still have some of its side effects because i didnt finish steroid at that time I rushed going home on my responsibility i wasnt quiet aware of how long MS can remain thought time heals
Still my balance is bad and my walking isnt normal
I wish I reverse time


mlgilber1
4 months ago

@melmel1 Yes, I feel much better since going on a dmt. I get Ocrevus infusions every 6 months. A lot of my symptoms disappeared and the others lessened tremendously. I was having to use a walker at all time due to balance issues and dizziness, but ever since my infusion I haven’t had to use it even once. Nerve pain for me has always been bad and my legs were permanently numb and tingly for over a year and then felt pretty normal after my infusion. It will still flare at times due to something else going on, but it’s no longer bad. I was fortunate enough to make a lot of improvements. My next infusion is only a month away so my symptoms are starting to flare a little and I called my nurse and she agreed it was probably my last infusion wearing off a bit early which is common. I’m going to talk to my doctor to see if next time we can do it at 5 months instead if I’m not feeling well again. After my first infusion it took me a little over a month to recover so I’m hoping this time it won’t take as long. But once I’m recovered after my infusions I feel great!


melmel1
4 months ago

@nutshell88 hope you improve soonx

@mlgilber1 @that gives me some hope that things can improve , and im so glad your symptoms have settled now x

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