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In limbo land - had tests but neuro has not said ANYTHING!!! (Long story - sorry)

Hello, I am completely new on this formum and am not really sure whats going on other than that I am quite scared at moment.  Here's my story so far...

In December 2010 I woke up with a huge red blood spot on my eye.  Went to GP who said it could be blood pressure related as was quite high, but to be sure go to opticians for a test so they could see if anything happening behind the eye.  At the opticians they gave me field vision test which had to be repeated 3 times because the results were not normal.  After the third attempt she said that she wanted me to have an urgent refferal to a neurologist because the the field vision showed that there could be a problem 'deeper'.  Off i trots back to GP to hand in referral letter and in early january I had an appoint with a neurologist in Sheffield.  

At the first appointment I was seen by the neurologists registrar - who I might add made me feel like I had totally wasted his time as he said that his preliminary tests did not reflect the results on the charts the optician had sent. After he asked if I had ever had any problems before, assuming he just meant relating to the eye,  I mentioned that 10 or so years ago I had an extremely painful episode of optic neuritis so he went to chat with my consultant.  The consultant came into the room and said that because I had had this in the past he would send me for a brain scan and perhaps run their own field vision tests.  (One in the face for the registrar he he).  Anyway 1 month later I had the MRI with contrast and a bit later an evoked potentials test.  I waited and waited for the result appointment to come through but nothing so I rang the department who said that the consultant was a bit behind and that they would probably write to the GP with results.  As time went on, I naively thought that no news was good news.  A year passed and in January 2012 I received a letter asking me to go and see the consultant - i thought ok, perhaps they are going to sign me off as everything was okay.

When i got there he looked at my notes and said I was supposed to see hime after 8 weeks...I replied that I never received a letter and that I had telephined the department.  he went on to look at the report from the mri and said '...hmmm I can see that the mri found some 'abnormalities' which coinsided with the optic neuritis I had in the past'...but to be sure he wanted me to have a lumbar puncture and a field vision test at the hospital.  he then apologised for the wait (ha! ONE YEAR!!!!!!) and he would see me in three months after the tests had been done.  So I've recently had both of those tests and am waiting patiently for 5 weeks to pass when I will constantly ringt he secretary to chase up an appointment.

Until Friday, I had no idea that all these tests related to a potential MS diagnosis until I chatted to my GP about severe IBS and Reflux I am suffering with.  he asked if I was particularly stressed at the moment because the 'suddenness' of these two conditions was strange 'for me'.  I explained that i had just a lumbar puncture last Monday and perhaps it was that?  He then wanted to know why so I told him the whole story.  He then said that he was 95% sure that they are testing for MS as the optic neuritis was a classic sympton and because another possible related event had happened years later then this would fit a pattern.  I then said well could the refux and IBS be related, in addition to the dizzy/vertigo spells I have had been to see them about in the past, the tennis elbow and foot pain last year...he just ummmmed and said well yes possibly but that I really need to get these result from the hospital first.

I had not told the conultant at the hospital about these previous medical issues as at the time I thought he was just relating the question 'any problems?' to my eyes.

After leaving the GP on Friday my head has been a shed..I hyperventilated on the way back to work and have been really teary.

So here I am crying at my computer not knowing who to talk to, probably over thinking things and terrified of my results in five weeks - also quite annoyed that the hospital made me wait a year for the next stage - all this couild have been sorted out a year ago.

Can anyone relate to this - should I be feeling like this or has my GP just put the frightners when it could be nothing and not related to MS?  Thanks for listening

I can relate to what you are saying Amanda, I had all the tests you have mentioned and was diagnosed with MS but they are carried out for other conditions as well. I don't know if you know much about it, but leaflets from the MS society will explain it all to you, you can read them on line too.

It's only natural that you are upset and feel frightened, but your GP probably felt that he had to tell you what he thought. I know you're going to be worried until you see you Consultant, but getting a definite diagnosis is a relief, at least you know what's been causing all your problems.

Try to keep positive, even if it is MS you can still live a 'normal' life and enjoy yourself, I do.

Keep strong.

Lynne xx

Hello Amanda, and welcome to the site happy2

 

A year?!?!?! GOOD GRIEF!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! angrycrying2confused

What a nightmare for all of this to suddenly get dumped on you letdown  You asked if you should be feeling like this? Well, yes! If you weren't, you couldn't be human!

 

Optic neuritis (ON) is closely linked with MS because about 50% of people who get it go on to get MS. It can also be caused by other things though and can occur on its own. If we add in the MRI abnormalities it does suggest that your ON hasn't occurred on its own, but there are still plenty of things that might be behind it including relatively easily fixed things like vitamin B12 deficiency.

 

Try not to worry too much about not having told the consultant about other things you've experienced. You can tell him at your next appointment after all. If you'd rather not wait, then you could also write to him or email him to tell him about them.

 

I hope the results come in soon. If it does look like MS, please believe me that it is absolutely not the end of the world. Life still goes on, and can still be good!

 

Hang in there.

Karen x

Hi Amanda and welcome to the site.
There is no doubt that you have been shoddily treated and I’m sorry for you about that. It must have come as a terrible shock to you when the gp explained the reason for all of the tests.
I was in limbo for over a year and although I knew what the tests were for when the gp first mentioned ms I sat and cried uncontrollably in his office for 10 minutes.
I can tell you now though that ms is not the end of the world! I don’t work any more but for me that is a relief I didn’t enjoy my job. I take things a little slower but there is nothing that I can’t do that I didnt do before ms, Please don’t be frightened as, for me, the fear was a lot worse than the reality. Diagnosis for me was a huge relief. I wish you all the best and do let us know how you get on.
Just one other thing please please try not to google loads on ms. The media and tv only ever show the worst case scenario and the Internet is full of crackpots. The ms society and the ms trust websites give accurate no nonsense advice and they are the best places to keep you informed.
Good luck.
Chis

Hello Amanda

Gosh I can't believe you waited a whole year. It's not suprising the GP's comment came as a shocked but just to reassure the tests that are being done can be for many other things as well as MS. Easier said than done but try not to stress as this may make things worse.

Echoing the other comments the thought of MS is scary of course - when I started with symptoms and MS was discussed all I thought of was being stuck in a wheelchair and dependant. Now 6 months on though I have no diagnosis the thought doesn't scare me as much and thats because from talking to people and reading I've realised that not every person is the same, having MS doesn't have to control your life and a lot of people don't end up in wheel chairs and can live a relatively normal life. So to reassure you it's not all doom and gloom.

Hang in there Amanda whether it's MS or something else there's lots of people on this forum you can talk to, to get some support.

Reemz

X

Thank you everyone...I am trying to keep calm and not think about it too much it is proving hard.  Do you think I should ask the consultants secretary for the lumbar pucture results to see if that gives me heads up before the appointment with the main man?  I was just thinking that I could then let them know history/other unexplained stuff that could relate..or am I just jumping ahead too much and almost wishing it on myself?

No reason not to phone the secretary to see if he/she'll give you the LP result, but I'm not sure I'd bother telling them your other symptoms - better, I think, to tell the neuro when you see him, or to write to him so it's properly on the record.

Some secretaries are better than others at giving info, so don't be too disappointed if you get told that he/she can't tell you anything.

Karen x