I’m just wondering is there anyone out there diagnosed with MS (2019)and no symptoms. I went into Hosp with something completely diff and lesions spotted. I’m anxious most days though will I be hit with something all of a sudden. I did end up going through another serious illness in 2020 so I had to come off meds. I would love to here from someone that has my feelings about it all, I’m just dillusioned that I have MS and have kept it very private from people I know.
I find it odd that they’d diagnose MS based solely on your lesions. It’s my understanding that lesions can sometimes be caused by other illnesses, and I’m wondering why they immediately jumped to MS if you aren’t showing the symptoms of it. No wonder you’re feeling stressed!
hi where do you live? i was under the understanding you cant be diagosed with MS without satisfying the McDonald criteria hence it took me 16 years to be diagnosed. One set of lesions can be CIS. (clinacally isolated). I would persoally query this diagnosis. was it made by a neurologist? For example why did you go into hospital and what was it for to have an MRI to show up lesions?
I am with NM on this i think you should query this diagnosis. IMHO.
I went in with a bang to my head just as a precaution. My lumbar was positive. Had one big and a good few small lesions. My neurologist diagnosed this
Still for me and others does not make an MS diagnosis. I had negative lumbur well it was muddied as you have to get a blood test alongside it and mine showed inflammation although the lumbur showed O bands. Inflammation in the blood deems the lumbur negative.
Lesions are so non specific. I just feel if you have had this 2 years? You would have new symptoms surely. Not that i dont want you to have MS lol, but if could be other things which do have these tests as positive.
I would want another MRI as again surely if you have MS you should be told what type, RRMS, PPMS and other types, so you would know what treatment plan you should be on?
Just when you go into hospital the on call neurolgoist would normally refer you to the Neurologist who deals with MS on outpatients. When i went in with another episode of memory loss the neurolgoist on call diagnosed me with TEA, but he referred me back to my neurologist who was dealing with my MS.
This is the one you need to see. I would hate you not to have the treatment you should be having for MS. that is what is worrying me. take care. xxxx
That must have been a shocker. I suppose the one good thing about an MS dx without obvious damage having yet been done is that you can quickly get on a DMD to help it stay that way. Has that happened in your case? If not, I personally would be asking why not. You don’t want to waste a valuable opportunity to get on top of MS before it gets on top of you.
I was diagnosed almost 5 years ago and haven’t really had any symptoms. Had a few things which may or may not be MS. Had a few sessions of vertigo which were felt to be non ms related and had a few uti’s which i think is more menopausal than ms. Very grateful to still be well but also cannot relate to my diagnosis at all. Feels like one day they will say it was a big mistake. On the upside I managed to claim on my critical illness insurance and paid of my mortgage.
Finally I meet someone that has no symptoms to. Tks for replying. I had surgery last Year for another illness which next day I went into menopause. So that has it’s own symptoms which I put things down to that. A hard 2 yrs and don’t know where to turn or who to talk to. What meds if you don’t mind me asking are you prescribed. I was on Tecfideria due to surgery but recommending Plegridy. I’m confused by diagnosis I have positive lumbar and a good few lesions
I am on Copaxone. Keep taking it, injecting myself three times a week but have no idea if it’s working or not. Just have to be grateful while it lasts I guess. Anytime you fancy a chat or a rant, let me know!
I’d love to chat more with you coz I’m so confused with it all. Kept it very private from close family and some friends as not to worry anyone. Can’t believe I have it. Still worries me if some day all of a sudden I get hit with something. I’d love to talk more text etc privately. Well done on getting mortgage sorted
Hi . Just wondering how you are getting on ? Any new symptoms ?
I was diagnosed last week after heavy left side . Suspected stroke . MRI detected 15-20 Lesions. I’ve never had any other symptoms in my life to point towards MS. Just Seems so bizarre.
Hi Caroline, you’re symptoms sound identical to mine, I had a head, spine and cervix MRI which I’m awaiting results, I had a letter through for a face to face appointment this Saturday - so I’m wondering what the outcome will be! Did they just diagnose you through the MRI or did you need a lumbar puncture? Thanks in advance x
Yes I just had the MRI scan on brain and guessing the number of lesions was enough for them to diagnose . Let me know how you get on , we’re all in this together xx