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New Diagnosis trying to get head around things

Rest up Ray. Take it easy for the next few days. Don’t forget, nervousness and worry add to the stress of the new drug. Stay well away from anyone with colds or viruses (start carrying small bottles of antibacterial hand gel?).

Let us know how it goes.

Sue

will do Sue…my Husband is going crazy amount me washing my hands every 2 mins !

but I have to travel on train to London …what chance is there ?

So I have had tests and grateful for it all being done in just over a month. Fun part because it was private they’ve written to my gp who has to do a referral to an MS specialist. I only saw the letter yesterday and seeing Ms in writing even tho I was told and was being positive has kind of hit home. Today turned into a bad day headache, pain in my side got worse and just want to sleep, plus broke another nail lol. Are there why suggestions for coming to terms, it sinking in?? I’ve cried a lot out of fear of the unknown that’s for sure. Thanks

Definitely get a small antibac gel, stick it in your handbag. And use it, often. Plus, hit a lift button (or ticket machine buttons etc) with your knuckle, not with the pad of your finger. Try to keep all sources of infection connection away from your face. So as little transfer from other people to a minimum.

Think about your immune system working at less than normal strength.

But don’t stress out about it, build some infection controls into your life and live life normally.

Sue

Great Tip Sue - i did see a programme about that recently, even cash machines can kill you.

@TC24 - Mine was the same as you - private to NHS, had to re do all the tests, would not accept the privatley paid for ones !!!

found that hard to accept, consider how much they cost and how busy they are - was the same specialist

but having said that …the NHS have been most excellent

Keep talking about it, and to b honest - actually meeting others ( in person ) who also have it, shocked me and made it real

everyone has their own stories - yet thet are the same

R

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Welcome to the forum TC. You’re right about it being a good thing to only take a month for diagnosis, but an utter pain to have to do it all again (only much slower), to get sorted with the NHS. Which you need to do in order to get DMDs on the NHS.

It’s a shocker being told you have MS, even when you’re expecting it. I imagine you are going to go through many emotions over the next weeks/months. From furious anger of the ‘why me?’ and ‘it’s not fair’ type. To depression and sadness about the change in your life.

For sure, the uncertainty about the future is one of the worst things about MS. Regardless of which variety of MS you are diagnosed with, you won’t know how it’s going to treat you. Assuming you have relapsing remitting MS (by far the most common), make sure you find out about disease modifying drugs (DMDs). These are designed to reduce the number and severity of relapses. So enable you to have some control over your future.

Welcome to the forum. I know it’s not a place anyone aspires to belonging, but we are a supportive and friendly gang.

Sue

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Thanks for the reply Sue. Good to know I’m not on my own. Had a bad day today so was off work.

Thanks R. Not reassured by NHS not accepting the results. I have no intension of having a lumbar puncture again it left me in a bad way for 3 weeks. Is there support group meetings anywhere that we know of?? So far anyone I tell all I get is “oh I’m sorry to hear that”. Why I’m not dying or have cancer or anything like that I just have a life changing thing. And as supportive as me mum is she isn’t helping in the right way, different facts every phone call lol. I have friends who are ignoring it and to them I’m not tired all the time and have a stonking headache. Just frustrating. I’ve cried for 2 days, my husband is talking to everyone and getting help but I think it’s help for him. I’m not overly religious my family are but I’ve actually debated going to church this weekend. I still can’t get my head round this!! TC

Hi TC

Have a look at the tab on the top of this page marked ‘Get Involved’. Then scroll down to the bottom to ‘Find support near you’. Put your town or postcode in and see what support groups, MS centres or other services are available in your area.

It’s sad but true that our family and friends may want to help, but often they can’t. Unless they know what your MS is like for you (and no two people experience exactly the same symptoms), they can’t really get it.

Keep talking to your mum, she’s probably devastated that you’ve been diagnosed and just wants to help. Plus your husband, being male (excuse the massive generalisation please), he’s not going to find talking about things so easy. But again, keep trying. Just keep in your mind that while you’ve been diagnosed, it will affect his life just as much.

As for your friends, sadly they often think that by looking at you it seems life just goes on as normal. They don’t understand. You can try telling them, but if you find you’re not being supported, be prepared to put less effort into those friendships.

Re your private tests and having to be re-diagnosed, make sure you get a complete copy of the results from the private neurologist you saw. There is absolutely no reason for having another LP. Getting full results, and having these backed up by new NHS MRIs should be sufficient. If the doctor wants you to have another LP, ask why and what information that will provide him/her with that’s necessary for diagnosis. The fact is that not everyone with MS has a positive LP. It’s not a requirement for diagnosis (see https://www.mstrust.org.uk/a-z/mcdonald-criteria ).

Meanwhile, keep talking to us on here, we may only be ‘virtual’ support, but we do try our best.

Sue