terry 26/11/14
Last reply 3 years ago
Partially diagnosed and Freaking out!!!

Hi guys, I’m 36 years old female with a young family and my GP has just told me I have MS. I’ve recently had an MRI scan that was completed due to some unexplained symptoms…it came back with 3 spots, 2 non-specific and 1 that they are confident is MS. Have no idea what part of the brain they are located…ahhhhh….It’s weeks before I can get in to see a neuro and my mind is going insane….what does this mean?
What questions should I be asking the neuro?

I want to be strong like you guys, I admit reading your posts have really helped me, but I just can’t get my head around it, I’m struggling to act like everything is ok with family and friends who know nothing of it.

Would love any thoughts or experiences you can throw at me…(pls be a little gentle…I’m a ball of tears atm

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3 years ago

Hi terry. Right chill. The specialists don’t even know what they are talking about, so don’t stress about a GP’s diagnosis. And even if he is right. Your life isn’t over,, you may hardly even notice it. The worst thing you can do is think the worst. Don’t start googling lots. That won’t help one bit. Carry on day by day and see what the nuro says. Spots on brain could be anything and nothing. Just carry on as normal, wait and see. Crying and stressing wont make things better, only worse. Deep breath. (Now forget).

3 years ago

It is scarey as shit, but it is not the end of the world
This time two years ago I was in your shoes , I could not believe it and I refused to accept it I thought it was the end of the world. Nothing much has really changed in my world. I am a bit slower and more careful about falling over, but the rest is minor. You are young and strong and this isn’t going to stop you , it is a weird blip and there is so much help here. Huge hugs and keep asking anything you need to. This is such a great source of info and everyone will answer anything they can.

3 years ago

I echo all the above. But of course you’re worried – who wouldn’t be? When I had the tests (NB that a GP can’t do), I was told there were about 16 other conditions it could be. It’ll be the same for you – it could be MS, yes, but it could also be something else. When I got my diagnosis, the neuro said: “it’s not a terminal illness, it’s a chronic condition and it’s up to you to manage it”. MS treatment has changed enormously. It’s all about a) finding the right drug to knock it back and b) management of symptoms. This site is full of people’s experiences of both of these things. And IF you have to join this club (that no-one wants to!), you’ll see that we’re generally just getting on with life. Keep us in the loop, big hugs xx Kay

3 years ago

Hi @terry, don’t get too worked up over what your gp said. The brain and MS are so specialised that most gp’s will admit they’re not sure what’s going on. Even the MRI’s contain so much specialised info that the gp cannot adequately or fully explain it. At least this was the case with me and my gp said it was best for my neurologist (who I was referred to) to explain the MRI results etc.
The best thing you can do in the meantime whilst waiting to see a neurologist is to stay calm and not stress. This will only worsen your condition. Just do whatever it takes to get some time each day to relax/rest/destress.
Everything will be ok no matter what the outcome. Stay positive and let us know how everything goes.
Keep well x

3 years ago

Hi everyone,
THANKYOU so much for all your positive vibes and words of much needed wisdom. @graham100, I think of your post regularly when I’m going into panic mode…..right. Now CHILL!!

3 years ago

@tabbycat, thanks so much for the hugs, they mean a lot. I’m so glad to hear your world hasn’t changed. Did it take them (specialists) long to make a clear diagnosis? What symptoms did you have?

Kylie and Kay, thanks for your kinds words and support. Kay I love what your Neuro said about its Chronic condition not terminal. Puts it into perspective doesn’t it. I am very worried about the….what if it’s something else? What are those other spots?? MAN, your head can send you down a path of pure insanity if you let it hey!!

But, you are all right, stress and crying isn’t going to change anything and it sure isn’t helping me…it’s time to suck it up, live it up, and be strong. Well. I’m going to try anyway!!

Thanks again everyone. Words can’t describe how much your posts have helped me pull out of the dark cloud that is now hovering above my head. I will keep you posted on my journey and would love to read more about your worlds sometime soon. xxx

3 years ago

Hi Terry.. totally agree that it is a very frightening time.. I was diagnosed in April by a Neurologist and it totally shocked me took me a good few months to get my head around it. I have found a lot of reassurance on here and on trusted websites like MS Society or MS UK and have had cause to phone them for a bit of support and advice. Maybe while you are waiting for your Neuro appointment look on these site and maybe phone someone from there who may be able to put your mind at rest as to there being many options out there to help you.. Best wishes Terry keep in touch on here and let us know what you find out 🙂

3 years ago

Hi Terry,
Its a total rollercoaster of emotions. You have no other option but to hang in there, chat on here when you need to, and take each day as it comes.
Its so hard. I am 6 months since diagnosis and its only now that I am kind of getting my head round it.
Take care, Andie x

3 years ago

Hi terry. Feel any better?? I’m reading things like not the end of the world. And six months and just getting head round it. Hmmmm. 2yrs and I still don’t believe it, and it was the end of the world as I knew it,, but guess what I started a new world, amazing how the average human can adapt with time, feels terrible at first. Like being cheated on or someone close dying, but in time things get manageable. (MS. Same).

3 years ago

Hi Terry I’m newly diagonised in June had MRI scan in May GP told me it show MS my head was all over neuro appt was on nhs in July could’nt wait that long so got in touch with a private neuro whipped me into hospital had loads of tests to confirm it told to keep my nhs appt had another mri scan in Oct shown lesions stable and ms not progressive given no treatment gone back to work on a phased return just taking day by day so don’t worry until you get it confirmed yes this is a great site made lots of friends so enjoy your family around you I have been having massages to keep me relaxed and I have 2 big fellas at home to look after and looking forward to my daughter graduating and her 21st in July x


3 years ago

Hi @terry, hope things are settling down. I wasn’t diagnosised for 10 years after my Ms started and oddly I am glad of that because I didn’t know I should be worried and just got on with life and did plenty of things I would never have dared to do now. So I am At least 12 years in, still working full time as a teacher, feeling a bit slower all over but that has probably got more to do with my age !

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