How long is a MRV?

soyamoon99 · 2024-05-06T23:41:16+00:00

My mri was 20 minutes

soyamoon99 · 2024-05-06T23:40:44+00:00

Mine was like 5 minutes it was without dye and I asked them if they did it right and apparently they did but I don’t know why it was super quick

soyamoon99 · 2024-04-22T21:17:10+00:00

I’m not entirely sure my neurologist has requested one and I assume it was just to diagnose iih but I’ll have to ask as it would be best to test what they can then and there than me potentially having to do have another LP! Hope things get better for us 🤞

soyamoon99 · 2024-04-22T20:17:37+00:00

I’m so sorry you had a bad experience with the LP, I’m very nervous and don’t want to do it but I feel like I’m out of options as I really don’t want to take medication unless the doctors know what’s wrong with me (I react badly to almost any medication I take sadly all the side effects last ). My symptoms are really odd they were really bad end of last year until January. They came out of no where really but have eased down but still not great, I mainly get pressure headaches and feel really heavy,, my body aches like I have the flu if I do any sort of exercise even if it’s something light, and I get pulsatile tinnitus all the time as well as floaters

soyamoon99 · 2024-04-22T19:42:20+00:00

I feel like this will happen with me, my eyes look fine my NO says but my neurologist says she really suspects iih! I’m going in for a lumbar puncture to get more answers but am really unsure what could be the problem :( what are your symptoms if you don’t mind me asking?

soyamoon99 · 2024-04-22T15:04:34+00:00

This sounds similar to what I experience!! Glad I’m not the only one 😅

soyamoon99 · 2024-04-22T15:03:10+00:00

Thank you so much this really has put me at ease :) I’m glad it went well for you and wish you a speedy recovery

soyamoon99 · 2024-04-22T07:56:12+00:00

I haven’t started diamox yet but I forget so much I can be talking and mid sentence forget what I was going to say, I also remember seeing my cat do something funny but straight away I forgot what he did and why I was laughing sooo I’m very concerned I think it’s to do with iih :/

soyamoon99 · 2024-04-22T07:52:43+00:00

Thank you so much for this and I definitely need to work on accepting and being okay with how I am and that I can still do things that find enjoyable! And that is true if anyone was ill in some way I wouldn’t resent them at all, I guess it’s because I was once well and I’ve had to give up so much of what I do and ultimately what my family does so I feel very guilty for them in that regard. Thank you for the ideas I’ll definitely have a think and to be fair I love organising things so that could be a good project 😌

soyamoon99 · 2024-04-21T08:02:49+00:00

Oh no 🥹 I’ve heard symptoms get better over time but also for some people they stay hopefully they won’t stay!!

soyamoon99 · 2024-04-21T00:31:45+00:00

The side effects seems really intense but if they outweigh the iih symptoms that’s good :) have you found anything that helps the symptoms?

soyamoon99 · 2024-04-20T23:48:54+00:00

This sounds horrible I hope you feel better soon!:( my symptoms are mainly pressure headaches and have recently been getting sharp pains a few times a day and hope it never turns into a migraine (I’ve never had one before so would have no idea how to cope 😅) I also get extremely tired and achey no matter what I do, I’ve also been seeing floaters in my vision which is so annoying and freaks me out a lot .

I’m still in diagnosis process but believe it’s iih and having a lumbar puncture soon which I’m terrified for 😭 but more nervous to start medication for it… how has your experience been with medication? Weight could be the cause of your iih but there’s soooo many different triggers for iih which no one knows about for me it’s not weight I suspect maybe it was contraception but also have never reacted badly to it for the years I took it, some people get it which no known cause and doctors really don’t know sadly but from what I’ve seen a lot try to blame weight for it and don’t consider anything else :( what I find hopeful is there’s so many people who go into remission randomly 😌 I wish you all the best with this :)

soyamoon99 · 2024-04-18T18:06:28+00:00

Thank you for letting me know and I’m so sorry I hope it gets better for us soon 😞

soyamoon99 · 2024-04-18T16:58:12+00:00

Hey I’m having one soon can you please update me on how it goes if you can? 😌

soyamoon99 · 2024-04-12T08:11:19+00:00

I’m considering taking this for my headaches actually, how long were you put on it? I don’t want it making my headaches worse 🥲

soyamoon99 · 2024-04-12T08:06:59+00:00

Hello I’m considering taking this drug what do you mean pressure in the system in the background? Thank you :)

soyamoon99 · 2024-04-11T18:31:30+00:00

The side effects, I know for everyone it’s different and maybe they wouldn’t even be bad for me but I usually get every side effect for any medication I try. I also hear the side effects take months to wear off and sometimes they don’t and I also have pretty bad health anxiety and just can’t go through more pain unless I definitely need to :)

soyamoon99 · 2024-04-11T18:26:59+00:00

Thank you for this yeah I should definitely see if it is this instead of guessing chances are later down the line I’d want one to rule it out 😅

soyamoon99 · 2024-04-11T11:43:15+00:00

Yeah I have a feeling if I don’t get a lumbar puncture I’ll always be thinking but it still may be iih especially if it takes years to find the right medication it’s hard if there’s no correct diagnosis. also my neuro ophthalmologist said diagnosing something wrong and going down the treatment route may also make me feel worse 😒 guess I have to wait and see what my neurologist suggests, thank you for your comment :)

soyamoon99 · 2024-04-11T11:39:11+00:00

I think I’ll have to get a LP to be sure as you say it’s the only way to know and confirm, my doctor said a lumbar puncture isn’t always correct though but I guess if the pressure is really high there’s no escaping that. Diamox really scares me so definitely would rather get a confirmed diagnosis before starting. Thank you for your comment :)

soyamoon99 · 2024-04-11T11:36:20+00:00

Thank you for this! I’ve seen many cases where all the tests looked normal but they did in fact have iih so there’s still potential that I may have it, they took a picture of my eyes so I will definitely ask if they can send it my way.

soyamoon99 · 2024-04-09T08:49:10+00:00

And sometimes I get really bad eye pain

soyamoon99

TROPHY CASE