What now?

Hello All, I’m new here, but have been reading the forum for the past couple of months and found it to be a big help. I thought I would post my story to firstly provide anyone still looking for a clearer picture, (as I have been), with a further anecdote from which to help understand their own position. And to also ask for any advice or words of wisdom for my situation, which would really be much appreciated by me at this uncertain time. I started having symptoms of numbness in my right hand and foot 11 weeks ago which gradually spread up my arm and leg. My leg felt as if I was wearing a brace whenever I walked, but symptoms peaked at 5 weeks then faded. My arm and hand, however, are still very numb, somewhat weak and have decreased agility, which seems to be getting gradually worse. I have also experienced fatigue and loss of focus which was at its worst at 5 weeks, but has eased off. For the past couple of weeks I have been experiencing L’Hermittes sign. I have been very lucky and had good medical assistance on the NHS in London. I went to see my GP at the 4 week mark who referred me to the National Hospital for Neurology in Queen’s Square (just down the road from my doctor’s surgery). I was seen by a neurologist 2 weeks later, who examined me and took a history of my symptoms then referred me for blood tests that day and an MRI of my brain and cervical spine later that week. I found out my results a couple of weeks later. Blood tests were all fine, but my MRI showed a lesion on my spine and a white spot on my brain, which my neurologist said she wasn’t considering as it does not correlate with my symptoms and may have been there all my life(!?). I was sent for a lumbar puncture a week later, which wasn’t painful and not as bad as I had feared. I received my results a week later (this past Wednesday) which were positive for oligoclonal bands. My neurologist has told me that at this moment in time there is no diagnosis, other than Tranverse Myelitis (the inflammation on my spinal cord), but that if I have another episode of symptoms I will officially be diagnosed with MS. I’m aware that the McDonald criteria need to be met for a diagnosis and that I have only had one episode of symptoms so do not satisfy the ‘dissemination in time (or space)’ element. I just wanted to enquire if anyone else has been in a similar situation to me, and what happened in their scenario? I am due to go to the hospital for IV steroids tomorrow for 3 days, which I am not too worried about and hope it shakes off the symptoms I am having with my arm. I am worried that my symptoms may get worse (PPMS??), or at best just persist as they have been if the damage caused is irreversible. I am also due to have my follow up appointment with my neurologist tomorrow, so would like to make sure I ask her all the questions I can if this is the last time I will be seeing her (for the foreseeable future?). Can anyone recommend the type of questions I might want to ask at this juncture? I feel lucky that I have had appointments and tests in such quick succession as I understand that this is not the case for many people. But this has been quite a surreal 2.5 months, and the future now seems so uncertain. Any advice really would be much appreciated. Sorry to have rambled on for so long. Thanks for your help.

Welcome to the forum, you will find a host of advice on here, especially on Everyday Living. Your story is so postive and I am glad you have been dealt with at such speed and I wish you well for your steroids tomorrow and hope this helps you.

Catherine xx

Hi Catherine, Thanks for your message, really nice to get a reply (to what I now realise was a rather long post!). I had my first dose of steroids today, which all in all was fine. I felt like I was going to faint for the first 2 minutes. But managed to go to work afterwards. My neurologist told me I have between a 20 - 60% chance of having another episode of symptoms. And that my ongoing arm numbness is a residual symptom from the attack. Ongoing inflammation is causing the numbness to gradually get worse, but hopefully the steroids will treat this to some extent. It is likely some damage will remain, and if symptoms are still lingering 3 months from now they will probably never go away. Not great, but could be worse! I will be going for a follow up MRI in 4 months. At which time if more lesions are found this will be highly suggestive of MS. Will just get on with life now and hope for the best. With a bit of luck these steroids will help ease the problems with my arm and no further symptoms will occur. Thanks for reading. Best wishes.