opinions please :)

New diagnosis and before diagnosis
1

hi everyone,

i wondered if anyone could help with a couple of questions that have bothered me for a little while now.

i had an mri beg of year (i think) and at the time i had, and still do have this problem with my eyes where they just wont stay still in my head. it does not come with vision issues but it affects my abililty to sleep enormously! the rolling eyes are not visible to anyone and are much worse when laying down.

would this eye rolling be visible to the person doing the mri?

the person who did the mri noted that a mri with contrast would be beneficial, does the opinion of the radiologist count for anything with the neuro?

i had brain and spine scanned and brain showed one, i think, non specific lesion and two tiny indents in the spine, i dont know what these were but thats how they looked on the image he showed me.

i was referred to a specialist for these "indents " but he said that no operation he could do would fix this and he didnt think my symptoms were related to these “indents”

briefly symptoms are or have been:

awful fatigue

bowel and bladder urgency

pins and needles in both arms and legs, (started on left side only 3 years ago)

acid reflux

very heavy legs and constant muscle aching when doing the slightest thing.

same muscle ache with arms.

poor balance

electric shock feelings

poor memory

random pains

but overall just always generally feeling ill and never" normal"

i really dont want to go back to gp as i feel he thinks its all in my head.

when i first asked him about ms he said if you had ms you wouldnt be able to walk, then later the neuro told me its likely to be ms but then withdrew it.

so i think im just trying to help myself as medics are not really listening and i just wish they would try and help us to deal with symptoms even if they cant diagnose formally.

thanks for reading if you go this far

best wishes

mandy xx

2

Hi Mandy.

I’m a bit confused by the rolling eyes that others can’t see. Do you mean that it feels like your eyes are rolling?

Would the person doing the MRI be able to see your eyes actually rolling - no. Would they be able to see what’s causing your eyes to roll or to feel like they are rolling - only if there was a lesion or something like that and only if they knew what they were looking for (which is highly doubtful - the people who run the machine are usually radiographers and not trained radiologists), so probably no.

The opinion of the radiologist does count, but the neuro makes the final call - it’s his/her budget the money comes from to pay for it.

Any GP who says “if you had ms you wouldnt be able to walk” is a GP to avoid! I seriously recommend you get a new, supportive, GP!

If I were you, I’d get myself a new GP as a first step. Then tell him/her everything that’s going on and take it from there.

Good luck!

Karen x

3

thank you karen, i was hoping that you would reply

the rolling eyes thing is what it feels like, just that they wont stay still in my head accompanied by a strange headache thats not painful but just doesnt feel right.

i wondered if the neuro saw something in my eyes to give me a possible ms diagnosis as he said that based on my symptoms and examination. i saw him a couple of months previously but felt that he didnt listen to me and asked my gp for another referral but he sent me back to the same neuro! any way the neuro apologised but said that the gp only referred me for headaches so it wasnt completely his fault.

thats when he told me likely ms and told me to make sure i brought my partner with me for next appt.

i think i will go and see another gp and start afresh and i really appreciate your reply.

thanks

mandy xxxxxxxxxxxxxxxxxxxxxxxxxxx

4

i should add that my pupils were unequal for a period of months whilst i was at my worst.

5

Well, I guess it’s good that you’ve got another appointment.

I think it would be a good idea to ask the neuro exactly what the results of your clinical examination were (when he did your reflexes etc), and for what the next steps are as far as neurology goes. Also ask him who else you should see - you’re still having symptoms and you need an explanation - he should be able to give you some suggestions and maybe refer you.

If you don’t get anywhere, then get your (new!) GP on the case.

Let us know how you get on.

Karen x

6

thanks karen

i havent got another appt with neuro, i meant that when he told me to bring my partner with me i did and thats when he said not ms.

i will be going to surgery hopefully wed or thur so willl let u know.

bestwishes

mandy xx

7

What do you do if you don’t have a partner?

How did it go at the surgery?

8

i can tell u what u do if u dont have a partner u sit at ome worrying about it all and stressing that if u cant work at your job u have had it! thats what i do anyway- why i was so pleased to find this site, just knowing there are others out there in the same situation, or that those with confirmed ms still lead lives worth living is what has kept me sane the last few weeks- so thank you to everyone on this site

9

[quote=“Happymama”]

What do you do if you don’t have a partner?

How did it go at the surgery?

[/quote] o

hello

the neuro had already asked me about my life etc so he knew that i had a partner

and

im afraid to say i havent been to gp, it fills me with dread just to think about going.

i feel very uneasy at the surgery because i think my gp doesnt believe me so i dont really go until im desperate.

im lucky that although my symptoms are debillitating to me they are mild compared to others.

thank you for asking.

bestwishes

mandy xx

10

hello

yes i agree that this site is amazing and i dont know where iwould be without it.

its great to know what kind of things can happen in terms of this illness so that if it does happen its not going to be a massive shock to you.

it must be terrifying to just suddenly not be able to walk or to see but if you go by other peoples experience at least you know that it can be a temporary thing and that you can recover from it.

im glad that you’re getting the support you need from here and hope that things get better for you .

if you ever need to talk feel free to message me.

best wishes

mandy xxx