MS Society UK | Forum

Hello all, very new to all of this!

Hi All,

Just wanted to say hello. My neurologist called yesterday to say that my last spinal fluid test had came back positive, between this and the brain lesions he felt more than certain I had MS, but wouldn’t say 100%, is this normal? It all started in Feb with Optic Neuritis, then a month or so later my tongue and the right of my face got all numb and tingly. Had other odd things too. Anyway all of the doctors (who have been lovely) have said all along not to worry as the MS drugs now really help and I am just waiting on the MS team to contact me so I can get a hold of said drugs.

I am feeling very in limbo right now and just trying to get clued up before the MS team do get in touch. Today wasn’t great as I told my boss, I am a web designer and he is insisting I come into the office soon to work so I can answer the phone. I was already super cautious with COVID and not sure how I could get into the office without public transport as I work in the city and parking is a fortune. I am more than aware that my symptoms are very very mild and that I should be counting my lucky stars, but this has thrown me.

I am just rambling now. Anyway apart from the work thing I think I am coping ok with it all, please tell me I never have to have another lumber puncture, that wasn’t nice! But I have accepted that it is what it is and I just need to get on with things, would be so much easier if COVID would just bog off though!

Anyway if you got this far well done and thank you!

xx

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Welcome to the forum Lindsey. It seems like a lot at first, but you seem to have a great attitude. Please make sure you know what your legal rights are as you venture on back to work.

Yes, the DMT (disease modifying therapies) are great these days. Luckily, more employers know about MS too these days.

wont say welcome you know what i mean.
Your employer has a duty of care to make sure they adapt your working to your disability. chat with MS society on their helpline. they can advise you.

i cant see why you cannot work from home you have been already.
xxxxx seems odd your neuro hasnt just said you have MS and the team will contact you or whatever. xx

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Thanks, I am a cheery optimistic person so the hardest part so far is to actually tell all the doctors how I’m feeling, that and all my family and friends when I don’t have a clue what this actually means for me. I called the ms society helpline yesterday and they gave me other numbers to call for advice. I might call them today as I am getting very stressed at the prospect of getting to and being in work. I have a four year old and need to stay healthy for him.

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The doctors are right about the drugs. I have had very active RRMS for 20+ years and have been on disease-modifying drugs throughout, Tysabri for the past decade and counting. I feel sure that I am just in miles better shape now than I would have been without them, and the range of drugs is miles better now than when I got my dx in 1999.

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Thanks Alison, I have now been reading up on all the drugs so that when I finally get an appointment with the MS consultant I know what I am talking about. I still haven’t had a date through yet and my symptoms are getting progressively worse :frowning: Hopefully I will get my appointment soon, I have been calling the neurologists secretary loads in the hope he can make it happen. Also thank you, that is really good to hear the drugs really help.

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Hey Linsey
I’m new here but if sounds as though your first symptoms are very similar to mine

Just wondering how you are getting on ?
I hope you’re well. X

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Hi Emma,

I am finally on my way on the MS journey, I had Optic Neuritis last Feb, the Opmathologist sent me for an MRI, then I was sent to the Neurologist in the summer, the general neuro told me I had MS after my lumber puncture in the late summer and I finally seen the MS consultant in October.

I have RRMS, so many of my symptoms have eased or disappeared and I am on a DMT tecfidera, plus I now exercise regularly and eat healthily. I hope you get answers soon, although it is a lengthy process. Sending hugs xx

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Hi!
Thank you for the reply. I am pleased to hear you are well and now getting treatment.
Thank you for explaining the timeline, I think if the DRs were more open about waiting times it would help manage expectations and relieve some of my anxiety
Thanks again for the reply I’m glad I joined this fourm it’s helpful for me to feel not so alone.

Best wishes x

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