Last reply 9 months ago
Newly diagnosed benign ms

hi there this is my first post I have very recently been diagnosed with benign ms it all started back 12-13 years ago when I had optic neuritis and was told it could be a early sign of ms which I didn’t give a second thought to being only 19-20 years of age. Then in 2010 I had facial numbness which was put down to a slight b12 deficiency. In April 2017 when I had numbness in my face which progressed to vision problems in my right eye and leg vibrations after walking I had a brain MRI at the beginning of June we’re my doctor said ms looked likely. I had my neuro appointment the beginning of August who looked at my scans and found lesions did a examination of me and my eyes and was told I had a clinical diagnosis of ms does this sound like other people’s way of getting diagnosed as I thought I would need all sorts of other tests etc? Thank you Amy 🙂

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lindsey_pharoah
1 year ago

Hi Amy, I too was diagnosed this year and I also had ON age 21. Knew the possibilities but didnt dwell back then. Then I started with what I now know to be partial seizures in 2012 and 2 weeks ago had 2 days of having to hold on to things as I was so unbalanced. I think every case is unique in the way it progresses so comparisons are hard to draw. Not takinv meds for MS. This may change after the unsteadiness…take care


lindsey_pharoah
1 year ago

Neurologists reference the MacDonald report to show how they confirm MS.


stumbler
1 year ago

Hi @xamyxloux and welcome.

@lindsey_pharoah has hit the nail right on the head. You need to satisfy the MacDonald Criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria) to receive a diagnosis of MS.

So, your clinical history has allowed this based on the latest MRI findings.


lindsey_pharoah
1 year ago

I knew you’d have the link Stumbler! Nice work 😊


xamyxloux
1 year ago

Thank you so much for replying lindsey_pharoah and stumbler I will take a look I suppose I keep thinking no it can’t be ms they have got it wrong also was expecting a lumbar puncture (don’t get me wrong glad I haven’t) 😬 Keep thinking I haven’t got ms but think I need to start accepting the diagnosis xx


lindsey_pharoah
1 year ago

I am still feeling that way too. MS can go undetected for a very long time, if at all. Try not to overthink, nobody can know what the future has in store, same for anyone really. Always here for a chat as we are in a similar boat x


adar
1 year ago

About the benign diagnosis. As far as I know benign MS is only diagnosed 10-15 years after you are already diagnosed with MS.


potter
1 year ago

I was 55 when I was diagnosed, I didn’t have a lumbar puncture, my neuro said I had enough other evidence and lesions I didn’t need one. I also have a family history full ALS and MSers.
I had symptoms as long as I can remember but the doctors kept putting me off. Potter


tessa
1 year ago

I think Adar is right about benign diagnosis ..the Barts Blog is interesting about that and they are now reviewing even the 10 to 15 years idea.” How Benign is Benign ” is the post.
I was ostensibly “benign ” for 45 years,
But now I have SPMS .
Until the reason for this strange and erratic disease is found it all seems guess work in my opinion.


brijms
9 months ago

I was diagnosed in 2003. All I had was a drop foot and weakness on my right side. I lived life like it was golden and was told after many years they my MS was benign. Then in 2017 I had my first flare up. So now I have RRMS.


davidkirschner
9 months ago

Hello Everyone,

I’ve been gliding around in this bubble of well being for years and just had to finally share my thoughts. I Received my diagnosis thirty srven years ago. My foot sliding off the brake pedal was the first clue, I had unknowingly joined the many, fighting the most common and baffling disease of our generation.
Overnight I was tossed into an ocean of utter instability, my body refused instruction, I could only walk in very noticeable lurches, balance was impossible, speech became a garbled mess, I hear bells chime continuously, even now, eyesight too, declined, the horizon was no longer in it’s the familiar spot. My hand was welded to a cane for years. At times, MS robbed me of my sense of taste, it plunged a dagger into my back, a single session of excruciating pain that was just as sudden as it was prolonged.
I would respond well to corticosteroids, methylprednisolone. It took a while to recover but I pushed on, each time I would bounce back regaining most of my disrupted natural abilities. Exercise only helped, I would swim regularly. My MS was the most active through the 80’s and 90”s.
A rheumatologist took charge in 96′. He took a more aggressive approach and ordered a round of intravenous gammaglobulin, it took more than a day, I will never forget it because it represents a day of change. A week later I began to feel better, it took a month to feel all sorts of terrific. I willed myself to gorge on all this positivity, allowed my optimist self to bathe is this vat of healing, all with the objective of returning to myself.
Present day I walk in sunshine with a smile on my face and a song in my heart. I know all too well this bubble of well being may burst at any time. Years have past and there was only a pale appearance by the enemy. I continue to take exercise to heart, the benefits are endless. My neurologist calls me his “lucky man”. Although the enemy may lurk around the next corner, it appears, with a little luck, it just may be the corner i’ve already passed

I wish you all, Good Fortune

David

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