Forum

Hello all, advise and help needed!!! Many thanks

Hi all, quick background info!

I have had optic neuritis for 13 year, MS has been mentioned a few times over the years but never diagnosed! Then in jan this yr my ophthalmologist, (who I have seen since probs started) said a recent MRI scan showed MS. I have since seen a neurologist who was going to order copy’s of scans and contact ophthalmologist and so on. I am due to see neurologist in 2 days. We did discuss poss having other tests and poss drug treatment but not in much detail!

Today I am so so worried about seeing him. I really don’t know what to expect, what to feel and how to express my feelings and emotions to my hubby and family. We have a beautiful daughter who has her own medical conditions which makes things re me harder for us to discuss.
I have seen other discussions talking about lumbers, and that scares me!!!

Any help or advise would be great! Not sure how to feel or think about next few days!

Steph :frowning:
Xx

Hello, I'm not really the best person for advice but wanted you to know people will answer your call for help.

The diagnosis of ms is not one the ophthalmologist is qualified to give,but its good that after seeing something he has referred you on.

I'm afraid the road to diagnosis is one of eliminating other posible causes,but doesnt always include lp,I didnt have one.

When you see the neuro,take someone with you and if poss have a list of all the weird things that have been going on.Together with a time frame of when these things have occured.

If ON is the only thing that has happened its possible that you will be sent anyway with a clinically isolated syndrome diagnosis,and to return in the future should anything else occur.

Try not to panic,which I know is hard to do.If you do have questions write them down or when you are in there you will more than likely forget them.

Take care.

Pip

Thanks for your response, the vision problems are not my only symptom I also suffer with the numb sensations and the pins and needles amongst other things so I am fully expecting the neurologist to confirm the MS. When I saw him in may this year he expressed that he is confident that my opthalmologist was correct.

I am still struggling to come to terms with this and find myself when talking to family thinking they have no idea how I feel! It’s a very lonely time. I don’t know if this is the normal feeling or not??

Many thanks
Steph

Hi Steph

ON for 13 years is awful! Ive had it for nearly 4 months and I hate it!  The pain is awful and the loss of sight is debilitating.

I am sorry to hear you may be diagnosed with MS, and yes it is a very lonely time for us all on this forum. Noone else understands how scared and frustrated we are. Not to mention the pain and the horrible symptoms. 

I would advise you to write down your symptoms, write down any questions, and certainly take someone with you. I can imagine that you will have some other tests before diagnosis; I have had brain and spine MRIs and VEP, plus lots of blood tests and I may have a LP. To be honest I am not too worried about the LP as I had an epidural when having my daughter, and I cant think it can be that much different (I hope anyway!).

Please dont worry about seeing your neurologist as its all just a means to get diagnosed with whatever is going on with you. Please remember it may not be MS, there are many conditions that mimic MS.

I wish you lots of luck for your appointment Steph, please let us know how you get on.

Paula xx

Hi

I can only relate my own lumbar puncture experience.

I went in, I made sure to drink a good deal of water beforehand.

I asked the consultant who did the LP if they had done an LP before and he said he had done many before (yay!) so he was experienced at the procedure. You want a person like that, someone who is experienced, not someone who is learning.

He also said that I did not have to lie flat for hours, just for about 30-40 minutes. I drank more water with a straw while lying there, sat up slowly, felt fine post procedure but made sure to stay hydrated. I didn't experience one problem afterward thumbsup

As far as the actual procedure I felt pressure and momentary sharpness-again no problems at all.

I do hope my positive experience helps to reassure you if you have it done.

Best

Tu x

Hi Steph, 

I think your feelings are normal. Since you have been under the diagnosis of ON and it is probably progressing to MS all that is written about coming to terms with a diagnosis of MS applies. That's how I look at it - e.g. - 

http://www.mssociety.org.uk/ms-support/emotional-support/living-with-ms/coping-with-diagnosis

I had an attack of ON  2 years ago and was discharged by the opthalmologist after sight was almost back to normal. This year I have been hit by fatigue, balance problems, weak legs and a week left arm. After a couple of visits to the GP's with blood tests I have been refferred to a neurologist but have no appointment yet (I should hear in August). 

So, I guess that  your meeting with the opthamologist will beto coninue you discussions of posss having other tests (depending on how confident he is about the MRI  and poss drug treatment. These forums have brought a web site about MS drugs to my attention - do you know of it? - An "independent source of assistance and advice" about MS drugs, http://www.msdecisions.org.uk/

Best wishes

 

 

 

Thanks very much for all your comments it’s nice to know I am not the only one feeling like this!

ON for me has been horrible as I guess it is for everyone. I have no sight at all in my “bad eye” and constant pain and black sockets, I see my ophthalmologist every 6mnth as I have regular attacks in my “good eye” which I have to have intense steroid treatment for! Every 2yr I have MRI scans and electro diagnostic tests which is where his dx has gone from my rencent ones!

I do feel a little better about seeing my neuro and I have a list as long as my arm if things to tell him and ask him so I will see how that goes!

Thanks again all
Steph x

Hi Steph, and welcome to the site happy2

Given your history, and what you've said about what the neuro's already said, I would actually be surprised if you had to go through very many more tests, if any. The neuro might want a more up to date MRI if the only one you have at the moment is quite old, but I can't see why an LP would be essential unless the MRI proves to be less typical of MS than expected. And even if the neuro does suggest it, you can always say no - it's not essential for diagnosis.

What you're feeling and thinking is absolutely normal. We are all different, but between us we probably go through every single possible emotion and thought! Do try and talk to someone though. If it was your husband who was going through this, wouldn't you want him to tell you? It's so much easier to deal with everything when there's someone standing there beside you through it.

Something very important to hold on to during the next wee while: you have had this thing for 13 years and you have coped. There is no reason that getting a diagnosis will change this in any other way than for the better because with a diagnosis comes better support, easier access to meds and therapy, and potentially treatment to keep it all in check as much as possible.

I'm not going to pretend that a diagnosis of MS is anything other than the pits, but you are going to be OK.

Good luck at the neuro appointment. Let us know how it goes!

Karen x

 

 

Hi Steph and welcome,

You have been given good advice by all the others and I didn't have to have a LP but was dx with MS. Wish you all the very best.

Janet

x

Hi Steph, just wanted to say a big welcome to the site. 

As Rizzo said, you will cope. You have coped with ON for the past 13 years. That shows how strong you are and how good at coping!

Good luck with the appointment,

Pat xx happy2

Hi all. Well neuro app was a right waste of time!!! Says he hasn’t received the copy’s of MRI scans but I have since found out he has and his sec just hasnt passed them to him!!! Fuming!!!

I am thinking of going elsewhere seen as he made me feel this morning like u am making it all up coz he isn’t ready to “officially” dx me!!! Ordered another MRI of my head neck and shoulders. I am so unhappy I have been in tears all day! My family keep telling me to keep my chin up and not to worry about it but how can I! I have walked about like a zombie today and for the last week not knowing what to do!!

And to top it off I am having another bad attack of ON in my “good eye” so am seeing ophthalmologist on Monday!!!

Down and depressed!!!
Steph!!!

Hi Steph, I'm sorry it was a waste of time! No wonder you're feeling bad. What a lot of nonsense to give you the feeling you are making it up. The scans are proof that somthing is up. It probably wasn't anything but a foul up - if he hadn't actually got the scans he couldn't be prepared (defitely a waste of time) - but that won't make yoiu feel better - especially with more problems with your  "good eye"! 

Hugs and best wishes.