Not sure if I do have MS or not

Hi there, I’m 22 years old and was told about a year ago I may have MS. The only symptom I had for the past year was a little bit of muscle weakness and that’s it. Fast forward to 2 days ago I started having numbness in my finger tips which then spread to the whole right side of my body, including my abdomen, chest, right arm, right leg, right side of my face, right ear, etc you get the point. Now the MRI images showed I may have MS but I was hesitant to start medication because I honestly didn’t have MS symptoms, but after what happened to me 2 days ago I’m thinking about starting with the medication. But I’m still not convinced that I have MS, does anyone have an idea on what else it could be.

1 Like

Many years ago I remember the neurologist explaining to me that MS was a bit like light but steady rain on dry ground. To begin with the ground still looks more-or-less dry – you can hardly see the dampness – it’s barely there. But over time, that changes. That’s the way the damage and the disability gradually accumulate: you think you doing ok until you aren’t. You get the picture.

The disease modifying treatments are the things that help you to keep the ground dry (so to speak) and your body and mind working well for as long as possible.

I am very sorry that you have these difficulties to wrestle with at such a young age.

2 Likes

Unfortunately and particularly in early stages, MS doesn’t have any ‘diagnostic ‘ symptoms. Looking back my first symptoms were a sort of tingling in my right arm . I thought ‘oh that’s strange ‘ and didn’t do anything about it. The tingling went away and then maybe a year later I experienced a numbness on the right side of my face. Saw the Dr and had a CT scan which didn’t show anything and the Dr asked me to let her know if it got any worse. It went away and then some months later I had Optic Neuritis which led to an MRI and diagnosis of MS.

All the above is a long way of saying that there aren’t any early symptoms that you could call MS Symptoms- just lots of strange symptoms. The key diagnostic evidence comes from MRI Scans.

So, sorry to say that I do think that if the medics are suggesting it’s MS then there is a good chance that it is, and the current thinking is that the sooner MS treatments are started the better. There are some pretty good treatments around these days.

My best wishes to you

3 Likes

Thank you for the kind words of encouragement. But even doctors keep telling me not to be hasty and wait for more tests or if new lesions form in my brain or spine.
So it’s a bit confusing, I don’t know what to think or what to expect but I’m hoping that eventually it’ll all turn out for the best.

1 Like

Thank you for your insight Hank. Do you mind me asking how long the numbness lasted in your face?

It’s all a bit of a shock to the system, and not rushing into things sounds wise. I wish you well.

2 Likes

Gosh, it was 19 or so years ago and I now can’t remember. I do remember that the Optic Neuritis lasted something like 6 weeks - maybe a bit more. I lost pretty much all vision in my right eye but it returned slowly, day by day over the a period of weeks.

2 Likes

Why may have MS?

Do you have a lot of lesions now? Have they done a lumbar puncture. You’re lucky if it’s been diagnosed early before any really horrible symptoms.

If you have a confirmation that it’s MS then I would go ahead with treatment. I was hesitant as well until the last relapse left me unable to walk at times. With a toddler running around me it’s difficult at times!

Sounds really up in the air, Neurologists don’t just starting treatment if they think it might be MS the treatment costs an absolute fortune! It’s also not a light treatment

Hi sunrie2, sorry to here about what you’ve been through.

I did a bunch of MRIs and a cerebral spinal fluid (CFS) test. The MRIs showed lesions in the brain but not in the neck or spinal cord, and the CFS came out negative. Now what I know or rather what I’ve been told is, in order to give a MS diagnosis active lesions must show on 3 different parts of the central nervous system (please correct me if I’m wrong), so that’s why I’ve been hesitant to start with the medication. With that said, the numbness I’m feeling in the whole side of my body has made me rethink about everything.

Yesterday I went to an MS specialist, and he’s requested a bunch of tests including MRIs for the brain, neck, spinal cord and thoracic area ( not sure why).

So I’m hoping that no new lesions show, and it’s just a trapped nurve or something.

1 Like

I see! Sometimes migraines and strokes can cause lesions on the brain ( not a medical specialist) so I see why you’re reluctant, especially if the lumbar puncture turned up negative too.

My first MRI was just my neck and brain. One lesion was found in my neck but I knew due to previous symptoms there was likely an old one in the bottom part of my spinal cord. I had an mri of brain and the whole of my spinal cord and I was right. One lesion is known as clinically isolated syndrome, could be the beginning of ms or could have been a result of a virus.

If you have it, at least it’s not active. The numbness is obviously worrying. Guess it’s a wait and see what the next set of MRI says. If you get a definitive of ms, start the DMT before it gets worse. Because once the damage is done it’s done

Take care and all the best with the results

Wow…can’t imagine how that must’ve felt, losing vision in one eye or god forbid both of my eyes is one of my worst fears…so that’s why I’m scared of getting diagnosed with MS. But knowing that it’s just temporary is comforting though, that’s why I’m not too stressed about the numbness in the right side of my body. So I’m hoping for the best.

Thank you Hank you’ve been really insightful and helpful, I appreciate that very much :saluting_face:

Thanks sunrie2, hopefully by the end of this week everything will be clear and I’ll have all my answers.

Appreciate the time you took to reply and help, thanks a lot :hand_with_index_finger_and_thumb_crossed:

1 Like