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I'm in a muddle

Hi,

This is the first time I have posted on here, but have done some reading and people seem so kind. In the middle of February I had a very painful eye and lost my vision over 3 days. I went to the eye part of A and E and at first they weren’t sure what it was but said either optic neuritis or … arteritis. My BP was high and I am 53. I had a CT scan to eliminate a tumour and about a week later had an MRI scan with contrast. I then returned to see the eye consultant at the end of March having heard nothing in between. The Dr told me that there were several areas of de myelination and that she would refer me to a neurologist, but absoloutely couldn’t tell me anything else other than it was indicative of MS. I am now in complete limbo as I don’t know when I will see a neurologist. Having had no symptoms other than the ON which was horrible, I now keep thinking I am feeling numbness and heaviness in mylimbs. I don’t know whether this is real or whether my anxiety is making it worse. I had a couple of weeks off work initially as I felt unhappy driving, but returned and have been OK. My vision is nearly back now.I feel tired and unconfident. Help! Can anyone help me get my head round this?

Sallyxxx

Hi Sally, It could be a catch 22 situation, you may well have the numbness and heaviness in your limbs, and if you do get anxious, this could be making the symptoms worse. I know, that certainly happens in my case. I have constant numbness on my right side, but if I get stressed out this gets worse and starts to tingle too. I would try and put everything to the back of your mind (easier said than done, I know). Try not worry about ‘ifs’ and ‘ands’ until you have spoken to a Neurologist. There could be a straight forward answer to this, which may not necessarily mean you have MS, hopefully. I am no expert in this field, and there are members on here who are very well read in this area, hopefully they may be able to offer you more support. Rizzo is usually good with these types of questions, hopefully she may see this thread at some point today and offer you some guidance. Hugs Sam x

Thankyou Sam.

I am trying to put things to the back of my mind. I have hardly told anyone as there isn’t really anything to tell.

I will try even harder! I do agree about it being a catch 22.

Thanks

Sallyx

Hi Sally Your situation sounds like mine a year ago when I was awaiting diagnosis following eye problems. It is hard to send things to the back of your mind - I received lots of helpful advice on this site. This was invaluable since I had no where else to turn and was keeping my health worries quiet as I had started a new job. Good luck - hope you get an appointment with the neurologist soon. Take care. Fade

Hi Sally, and welcome :slight_smile:

Several areas of demyelination and a bout of ON does suggest that you might be developing MS, but there are other possibilities, such as vitamin B12 deficiency and genetic conditions, and it’s even possible that this is a one off attack that never results in MS. It would have been helpful to know exactly what the MRI report said to narrow the possibilities down a bit, but that’s the neuro’s job of course and not some random amateur enthusiast on the internet :slight_smile:

One thing though - MS is only diagnosed when the patient has had at least two attacks or a year of gradually progressing symptoms. If everything else is ruled out, and unless your MRI shows evidence of lesions that pre-date your ON (which is tricky to prove with only one MRI scan), you have had just the one attack. People who have a single bout of ON are at about a 50% risk of going on to develop MS. Having lesions elsewhere in your brain increases this risk a bit, but absolutely NOT to 100%. So there is actually a decent chance that you will not develop MS.

Re your numbness/heaviness feelings: the brain does love to play tricks given half a chance so being told you might have MS and being (understandably) anxious about it is bound to make you notice all sorts of things that you might previously not. So do try not to worry about them. But, if they become more obvious / more of a problem, then see your GP and at least get them “on the record” - MS symptoms have a habit of disappearing right before neuro appointments and some neuros have a habit of disbelieving anyone but other medics!

Do chase up that neuro referral by the way - these things have a habit of going missing :frowning: Just give the appointments people a call and ask when you might hear about an appointment. They’ll tell you who to contact if they don’t know anything about it (probably your GP).

Karen x

Hi, and thankyou for your support.

Fade, I am like you in that I am trying to get a new job! I hope that you are doing OK, it is a very unsettling time.

Karen, I wish I had seen the report. The opthalmic surgeon just had it on her screen and it was too far away for me to see. She said that she would see me in 2-3 months and she hoped I would have been seen by the neurologist by then. I hope so too as I’m getting very stressed. I will chase it up tomorrow as you suggest. I take comfort in what you have written and am trying to distract myself.

As i said , I had no symtoms apart from improving ON until I found out about my MRI and now I seem to be overcome by them!

It will be my first day at work tomorrow since seeing opthalmic lady, so it will be interesting to see whether I am distracted or struggle.

Again , thankyou for the support.xxx

Hi,

Just an update. Chased up neuro appt last week with his secretary. Had received referral but puzzled as he is a neuro surgeon. She phoned me today to say that the letter was being sent back to the opthalmologist’s secretary so that it could be sent to a neurologist. So it goes on. I am trying to put it to the back of my mind, but it is not easy.

One symptom I seem to have since the ON is when I am in a large space on my own, I feel really disorientated and weird. I’m OK indoors or a restaurant or if I’m linking my husband, but if I go to the supermarket or garden centre, I feel strange. Has anyone else experienced this?

Have been off work for 6 days, back tomorrow.

I’m thoroughly fed up. Know I’m a lot better off than a lot of people, but I just sometimes feel I want to curl up in a ball and hibernate.

Sorry for moaning.

Sally

Hi Sally

I know exactly what you mean about feeling weird outdoors, i explained it to my neuro as ‘sensory overload’.

I couldn’t go out in big spaces unless i had my husband with me to lead me around. I felt that everything that was happening around me was too fast/bright/loud and i didn’t know how to respond to it all. This happened to me during a bad relapse and did gradually improve - hopefully never to return again (wishful thinking perhaps)

I would suggest avoiding these situations as much as possible until you feel better - maybe hubby could do the food shopping or maybe order online? Try and take it easy when you go back to work, as stress can make things a lot worse.

Hope your neuro appt comes through soon for you - keep chasing it though, sometimes it’s a case of ‘he who shouts loudest’.

Hope that helps

Laura x

Hi Laura,

Thankyou. It is difficult to explain isn’t it? It makes you feel very vulnerable. Hubby is fine coming with me but as I haven’t had a diagnosis, I’m busy trying to prove that there is nothing wrong with me! So have started doing things that I find difficult.

Work hasn’t been too bad as I only work 3 days a week and have 3 days off 1 week and 5 the next. Haven’t said anything about neuro appt there. They knew I had ON but I haven’t said anything about MRI results.

I will follow up neuro appt at end of the week.

Take care and stay well.

Sallyxx

Hi Laura,

Thank you. It is difficult to explain isn’t it? It makes you feel very vulnerable. Hubby is fine coming with me but as I haven’t had a diagnosis, I’m busy trying to prove that there is nothing wrong with me! So have started doing things that I find difficult.

Work hasn’t been too bad as I only work 3 days a week and have 3 days off 1 week and 5 the next. Haven’t said anything about neuro appt there. They knew I had ON but I haven’t said anything about MRI results.

I will follow up neuro appt at end of the week.

Take care and stay well.

Sallyxx

Sorry, don’t know how it’s come on twice, and can’t make it go away!

It is hard to explain and very difficult to adjust to, everything seems too much - i found it hard to talk and think at the same time also, although that could be a reflection of my intelligence!

Don’t push yourself too hard, you may come to regret it - let the doctors prove there is nothing wrong with you!

Let me know how you get on?

Laura x

Hi Laura,

I know what you mean about not pushing myself, but I feel in such limbo just not knowing, and with the referral not even being with the right person yet, I know I have a while to go. One minute I am sure I have MS and the next minute I’m telling myself not to be silly. I think as well because I haven’t said anything to anyone apart from my husband and 2 friends, I think about it a lot on my own.

I have a lot of me time as my youngest child is 15 and although gorgeous, he is usually studying or playing football or on his x box, and my daughter is at uni.

I will let you know how I get on, but I think it will be a while!!

Sally