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Newbie on the loose...

Hi everybody,

I am newly diagnosed with MS.

All started with optic neuritis about 10 years ago. I found one day i got up and things didn’t look quite right. I covered up my left eye and found apart from a grey blob i couldn’t see anything. I went colour blind and felt like i had eye strain and had pain when i moved my eye.

Anyway went to a neurologist and had an MRI and got told just optic neuritis.

Fast forward after a few minor episodes of optic neuritis to 4 years ago. I had had enough and i wanted to know more. My doctor referred me to an opthamologist who tested my eyes and told me he “thought my previous episodes of optic neuritis represented an MS pattern” I got referred to a private neuro who did another MRI which came back normal and i got told i had recurrent optic neuritis and if I had any more bad episodes to get referred back to them.

Around a year ago i found i was getting really fatigued and found it hard to walk long distances. I was starting to notice memory issues and long story short after several blood tests got diagnosed with chronic fatigue syndrome.

Go back to January when I was still having episodes of optic neuritis and just had a feeling something more was wrong. I found i was getting more episodes of anxiety, my balance seemed to be all over the place. My tiredness was becoming more noticeable and i was forgetting stuff more frequently. I asked for a referral to another neuro who specialised in MS and they did another MRI and a VEP test. A couple of weeks ago i was officially diagnosed with MS due to a couple of lesions showing in my brain.

I felt vindicated as other people always treated me like a bit of a hypochondriac (including my GP)and also relieved i finally had a concrete diagnosis!

I had an MS nurse come to visit me and talk me through what happens now but it was a lot to take in.

I have tried to stay positive but reactions from other people have been really hard to deal with. Some people have been really supportive and others have just kind of skirted round things and avoided talking to me including my family. Does anybody else find this?

(Sorry for the long boring post)

Hi.

Although no-one wants to hear they have MS, it does give you a reason for your bodys mis-firing! Its good you have an MS nurse and can get to know what might help.

Pace yourself and be kind to yourself too.

pollx

2 Likes

hi 1madlass

ive just started my journey,i too have found trying to get my gp to listen over the years frustrating to say the least,not helped being in a large practise and getting to see the same doctor twice in a row nigh on impossible unless booked 3 weeks in advance.I think thats been part of my problem not having the continuety of seeing the same doctor and them getting to know me.It hink ive been having episodes for years but now that every thing has come together,eyes,tremor.bowels pain around the body loss of feeling etc…all of a sudden the ‘‘dots’’ are beginning to be jioned up.I find many dont want to talk,my own feeling is because they arnt equipped emotinaly or scared of saying the wrong thing,many just dont know how to react or understand.i think as you get educated on it,empart the knowledge and educate them and give them an understanding.At the moment,i dont know if i have it(i have done a separate post going into more detail)…will let you all know where i am going,when i get there.takecare now and wish you the best

hi madlass (love the name)

as poll said, at least you know what is causing your symptoms now.

did your ms nurse talk about treatment options?

you will know what to talk to her/him about as you go along.

ms is such a weird beast.

i found it helpful to meet other people with ms, folk who have found from experience what helps them to manage.

have you got an ms therapy centre nearby?

they are brilliant places where you can have therapies such as HBOT (hyper barric oxygen treatment), reiki, massage, physio, yoga and much more. you can also have coffee and cake whilst getting to know the others.

it’s such a whirlwind having a new diagnosis.

you will probably have a local group of the ms society which can be a very useful place to go.

carole x

1 Like

Hi Carole

The ​neuro advised that as my symptoms are fairly mild they are not going to put me on medication yet.

The MS nurse advised me about getting steroids for relapses and advised this would be a max of 3 doses of this a year due to the side effects.

They also left me with a lot of leaflets for bedtime reading which were quite useful (especially the one about managing fatigue). I think they also mentioned about a support group which i will get a letter about. To be honest was quite a lot to take in.

I dont think that there is a therapy centre nearby.

I have a follow up with the MS nurse in May so will ask a few more questions about what is out there. I think i was just trying to take it all in when she last came to visit.

It is good to know that there are other people who are going through the same things you did :slight_smile:

P.S ta for the compliment on the name! - it sums me up pretty well lol