Young and wanting answers

New diagnosis and before diagnosis
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Hello everyone,

I’m new to this forum. Any advice would be greatly appreciated. I was investigated 5 years ago at age 21. I had a brain MRI scan which showed juxcortical, periventricular, subcortical and possible cerebellar lesions compatible with demylination. I did not have any other MS testing as I stopped going. The drs were strongly suspicious of relapse remitting MS.

Fast forward 5 years and within that time I’ve had numerous symptoms. However, there many “classic” symptoms of ms I do not have. I am in two minds , genuinely confused as to weather MS is to blame for all of this. I am now diving back in to get investigated. However, I just thought I’d like to hear other’s opinions on here who actually have the illness. Thanks again.

Symptoms:
Blurry vision
Confirmed history of anterior uveitis (eye condition now cleared up)
Nerve electric shock shooting pains
Tinnitus
Muscle twitches all over
Muscle jerks
Facial right temple twitching accompanied with jaw stiffness and tingling
Tingling in extremities

Symptoms I don’t have:
Numbness
Tiredness
Walking issues
Dizziness
Gait problems
No back pain
Bladder issues
Sexual issues
Problems with thinking
Muscle spasms

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Really there are no defined real CLASSIC SYMPTOMS OF MS. If you had a room of 100 people with MS i can guarantee everyone of them would be different.

what you experience is mild discomfort and could be down to simple B12 defiency, or a touch of anxiety.

What makes you now want to go through the investigation process when you stopped doing so when you were being investigated? With the findings i am surprised you were not further investigated at the time. five years on you still have mild symptoms, doesnt sound like you have had defined relapses. check out the MacDonald criteria for MS diagnosis.

If your worried i would probably start with blood tests first your 26 now so it would be good start. x

3

Go and see your GP. It is dangerous to use social media as an alternative. A diagnosis of MS is difficult to make and this is not the place to look.

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Hi crazy chick,

Thanks very much for your reply and your thoughts on this.

I stopped going due to feeling very overwhelmed and depressed at the time unfortunately. The gp told me to call up anytime if I decided to start the process again or experience new symptoms.
I do feel it is much more than anxiety I’ve always had the gut feeling there’s a physical reason behind all of this due to the fact of the brain lesions in characteristic areas of my brain and although I don’t get all symptoms they are actually hard to live with. Particularly nerve pain and blurry vision.

New symptoms arise and then disappear but some stay which is quite hard to live with because of the unpredictability. I am just so glad and grateful that I don’t have any problems with mobility.

As you mentioned I did actually have a b12 test and was discovered I have an absorption issue so that is true.
However, even when I take b12 some symptoms stay, and the lesions are on areas of the brain that are not very common with b12.

Thanks again and take care x

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Hi crd,
As said on my post I am diving back in to be investigated. I merely said I was looking for an input from those who do have ms and their thoughts as I highly value them. In no way was I using this as sole diagnosis.
Thanks

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on another thought have you been checked through gnea, had hormones checked etc. how are periods etc. sometimes these odd things can be down to female issues too.

Another thing as well i have noticed people with low B12 can have other autoimmune issues…

this is worth reading the MacDonald criteria for MS.

Something is obviously going on but it can be down to so many things even brain lesions can be sparked by things no one understands.

Just stay balanced and open minded. Being 26 can be hard work nowadays lol, with so much negative stuff on internet. WE didnt have that distraction back when i was that age.

I think i was in Hongkong then with my soldier husband and 2 kids. between 26 and 28 i had 3 serious health issues. 3 major surgeries.

Trying to be diagnosed with something from 2000 knowing i was ill with SOMETHING was way more stressful then all 3 of them, and 7 days stay in ICU lol.

I have been there believe me. 2000 to 2016 in limbo land. I could get under the stick quite easily sorry a silly joke.

when the neuro told me finally i had progressive MS i was relieved lol. I nearly hugged him. I thought FINALLY the relief just flooded outwards. I was HAPPY to be told i had a PROGRESSIVE DISEASE lol. I mean how stupid was that.

BUT iN between those times i have lived a great life. Yes i have had to deal with up and down days, anxiety and loosing my mum 2016 and my husband 2017, but i am still here lol. (Hum not sure thats a good or bad thing lol).

see what i try to say is your young, dont focus on the worse stuff keep enjoying your life, whatever it turns out to be you can look back and think wow i survived. I HATE THE INTERNET. GOOGLE especially.

The trouble is everyone on this forum has a different take on the subject we non of us have had the same time with one disease or branches of… we have all had it DIFFERENTLY.

ONE SIZE DOES NOT FIT ALL.

Your doing ok at the moment you have good mobility. all i will say being a mum is this. EAT WELL, SLEEP WELL, DONT SMOKE, and keep off google lol. xxxxxxx

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Hi Annalise, nice to have you with us. 21 at the time of diagnosis and with other issues to deal with, little wonder you decided not to continue with further testing. Going back into investigation now sounds like the right time for you, and that is important. You need to feel in control of what is happening to you.

Your neurologist will be able to compare disease progression and hopefully discuss a plan that works for you. Starting treatment maybe offered, particularly as as you say you have a limited number of symptoms. This status is what you would ideally want to maintain, if you can stop or limit further symptoms then great.

I know someone with MS, after the initial diagnosis, in her 30s, has never gone back, couldn’t face further investigation and didn’t want to live by a diagnosis. Whether that was the wisest decision, I guess only time will tell.

Another friend, also @ 30, has always been proactive in ensuring that she has all the medical support she needs. Gone out of region to see MS specialists of her choice. She is very trendy and when she has optic neuritis has ordered bling eye patches from America. She has the funkiest of walking aids, the coolest of wheelchairs. Don’t get me wrong it hasn’t all been plain sailing but her positive attitude has helped in her darkest of days.

We are all different, MS treats us all so. Balance personal research (Dr Google, yes a lot of posters do the same) with medical facts, beyond individual posts, this forum has a lot of useful information on it, backed by scientific research.

My Uncle once said to me ‘life is for living, get on and live it’ my advice for what it is worth, continue with your investigations, get all your results in, consider your options and above all else if things get tough reach out. Please don’t give up, it can be a long ride.

Take care, stay in touch :blush:

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Hi Annalise, have you received any diagnosis yet, and have you had any relief from your symptoms?

I myself am in limbo, having symptoms of MS but no diagnosis.