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Hello! Newly diagnosed, overwhelmed and scared

Hello, I am Rupa. I am a mum of two (3yo and 7mo) and I received my diagnosis yesterday. To say I am scared and overwhelmed is an understatement. I am sure those of you that have been diagnosed have all been there. I don’t really know where to start :frowning:

oh bless you. start by taking a deep breath. How were you coping the day before your diagnosis?

I expect you were just dealing with it all. At least knowing what you have is a start as now you can look towards starting meds that should help you.

Just be kind to yourself ok. take some time to let it all sink in. Gosh your a very busy mum with 2 little ones. It will be ok, draw on friends and family to help you too and be honest with everyone about how you feel. Dont feel you have to do everything in one day, learn to pace.

Big hugs. xxxxxx

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Allow yourself time to grieve, but not too much. If you weren’t expecting this, then it’s more of a shock, but the bottom line is that you’re still the same as you were before the diagnosis. Nothing is really going to change except that they’re going to find some medications that will help you in the long run, you’ll have a few more doctor’s appointments, and you get to learn big words that none of your friends know.

Now that you know what’s wrong, allow yourself to treat it the same as you would any other illness. Pretend that your doctor has written a prescription for you to rest more often, sleep longer, sit down when you have to.

Limit your Google searches to verified MS sites. Forums like this are great for learning things and asking questions. And then just breathe.

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Hi Rupa, sending you a big hug on receiving your diagnosis, it could have been a lot worse though and at least you know what all the odd, weird symptoms are. not all MS is the same, but I had my first symptoms back in 1979 when my daughter was 2, sensory ones, she is now 43 and I have only just started using a wheelchair about the house and worked until last year. Don’t spend the next few years worrying about what may never happen, enjoy your family, surround yourself with love and what makes you happy and who knows there may be a cure in the not too distant future.

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Hi Rupa,

I am in awe of all parents, two children, you must be a master of so many useful skills. E.G Prioritisation, time management etc etc . I bet 8 years ago you would have felt overwhelmed by the prospect of being a responsible and competent loving mum. So you already know that you are capable of dealing with unexpected stuff. (good & not so good!)
Also feeling overwhelmed and scared are quite normal when getting such significant news. You will deal with whatever happens, some things you will do well and others not so well (this is how we learn) I have had MS for the best part of 30 years and I am still learning loads, still making mistakes having some horrible times and some fabulous times. To answer your question I suggest that you build a support network of family friends and medical professionals who you can coordinate with and find the best way forward for you and your family. If you need less direct contact, this place is pretty good for sharing / gathering info or just letting off some steam with people who will not judge and probably have a good idea of what you are going through. In the meantime give yourself a pat on the back for all the amazing stuff you have done to have a steady family.
Wishing you all the best
Mick

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Thank you all for your wonderful messages. I have had time for it to sink in and my way if dealing with it now ‘what can I do to make sure I have the best outcome?’ I went through private health for my diagnosis and I have now been referred back to the NHS for the next steps/treatment. I have not heard anything yet, how long does it usually take to get an appointment at this stage?

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I didn’t realize that no one had responded to this yet. I want to say you’re looking at about 3 months, but that’s just what I’ve picked up on here. I’m not in England. If you haven’t at least been scheduled for an appointment by now, I’d start making some phone calls and find out what’s going on.

Hi if you have been referred back to NHS from private it can take a little longer so could be a few months. Chase the neurologist you saw and make sure you have been referred back. The problem in NHS is one TYPIST/SECRETARY can be typing for 4 neurologists even privately they are overworked and underpaid.

so its quote often down to lack of secretarial support. I had one letter from my neuro was dictated 3 months before i recieved it, that was the one telling me i had Progressive MS. I had my VEP in october 2015 and got results end of february 2016.

xx CHASE talk to your GP. they will have copies of your referrals etc. x