Hi, Finally had a more in depth answer from my neuro. He said that I have transverse myelitis in my spinal cord but also got 2 lesions on my brain, which he failed to mention in his letter! He said that because of the lesions on my brain he says its a high chance of it being MS but still can’t diagnose it! I thought that if you had 2 they could diagnose?! So I guess it’s a waiting game now, which is horrible wondering when it’s going to happen!
Hi, I’ve also been diagnosed with transverse myelitis just over a year ago & at the time had 2 lesions on my brain that were close together apparently. I’ve also been left with the wait & see approach, I hate it & it scares me, in some ways I would rather have been diagnosed the first time round. How did your attack affect you? I lost the use of my right hand and wrist & my speech was messed up. My evoked potentials were abnormal but lumber puncture was non conclusive.
Hi thanks for replying, I have been having pins and needles, numbness. Mine was on my left side and lost the use of my left hand but have got it back a bit albeit weak, and constantly got pins and needles in it. I have had the “MS hug” as well felt like I was wearing a corset. It’s frustrating and I’m only at the beginning! I’m better after having a three day course of steroids though and hopefully back to work part time within a couple of weeks!
It’s horrible isn’t it, could you move your hand at all? Mine was literally lifeless, I tried to tell my brain to move it but it was literally dead, it got worse over the period of a week, then gave up completely, then after about 10 days it slowly started coming back, by the time I got an MRI it had just started to move again, I had to teach myself how to write again, nightmare. It’s still not completely back to normal but I can’t complain about it now to be honest. I didnt have steroids as it had already started to get better. They thought it was a brain tumour at first. I didn’t or haven’t had any tingling or numbness yet. Where abouts are you in the country? I’ve got other things going on that I know aren’t quite right either. Someone mentioned to me on here that if it was transverse myelitis because it is to do with the spinal cord & left lesions on the brain that it’s classed as two separate areas of the central nervous system & therefore should be diagnosed but the neuro obviously doesn’t think that. It’s a minefield isn’t it, stay strong though & I hope things improve for you x
Hi Imo,
I’m guessing you still don’t satisfy the “dissemination in time” part of the diagnostic criteria, which specify you must have had at least two separate attacks.
At the moment, although you have lesions in both brain and spinal cord, it isn’t provable that they didn’t all come from the same episode, so you still might have had only one attack.
You need multiple places (two or more) AND multiple attacks (also two or more) to satisfy the “multiple” bit of multiple sclerosis.
Tina
I’d guess the same as Tina - it’s probably the lack of a second attack that’s preventing a diagnosis of MS.
Transverse myelitis is a diagnosis in its own right though, and very much easier to explain to people than probable MS or CIS.
I know it’s incredibly hard, but do try to get on with life and forget about a second attack. Apart from the fact that it may never happen, worry just gets in the way of making the most of life!
Karen x
Hi Transverse mylitis is one of the things that has been suggested to me, among others like possible MS or even radiation myelopathy (from treatment that I had in 1990). I had an attack 4.5 years ago numbness left side of body weakness on right! Didnt see neuro at the time because GP convinced it was a virus. My right hand went weak but I could still use it, writing was poor. After about 6 weeks I started to feel better. Then about year later I started to notice right leg heavy after exercise. This gradually got worse so I saw neuro and had MRI and lumbar puncture. MRI showed one cervical lesion and LP was clear. Had another MRI a year later which had not changed. I have been told that the attack triggered the development of spasticity in leg. All other symtoms had gone after 8 weeks of the original attack. Right hand is 95% ok.
Regards
Moyna x
Thank you all for your replies! I have decided I will now just get on with life and deal with things when/if they happen! It will always be hanging over me but I will push it as far back as possible! Going back to work in a couple of weeks, part time to start then hopefully back to normal shortly after! Everyone’s been so helpful on here I can’t thank everyone enough! Imo xx