Hi all Just wondering if anyone can shed some light?! Had first major relapse in oct 2010, then continued on fairly well but suffered my second major relapse (4 relapse in total) in oct 2012 and was then dx with rrms. However every attack I have had has been on my spine and my brain continues to be clear of lesions. Yesterday I had an app with my specialist and he has asked me to travel up to Liverpool to see the countries specialist in spinal ms, as he’s not convinced I have ms now and he mentioned the possibility of optical myelitis and I’m sure he also said spinal ms too. I’m confused, I havent so far noticed any problems with my eyes only my legs and occasionally my arms hands/fingers have played up but mainly it’s my legs which are causing me problems! Can anyone explain? Thank you Liana x
Hi Liana, I wonder if he means neuromyelitis optica, also known as Devic’s disease? Spinal lesions but none in the brain is rare with MS, and you would expect there to be some brain lesions eventually. However, there are some demyelinating diseases considered related to MS, that more closely follow this pattern. Devic’s disease is one of these. It tends to attack the spinal cord and optic nerve, but to spare the brain, by comparison. Although it can sometimes cause brain lesions, they don’t tend to be as many, or to look the same as MS. Transverse myelitis, meanwhile, isn’t really a disease in its own right. It’s more a description of an incident, or symptom, that could have a number of causes. Some people’s first episode of MS (i.e. before it can be diagnosed as MS), is an episode of TM. If they go on to have further episodes, it tends not to be called TM any more: you wouldn’t describe somebody as having “recurring TM”; it would go on to be diagnosed as MS, or Devic’s disease, or whatever it turns out to be. It is odd, though, for Devic’s disease not to affect the optic nerve. In fact, I think it’s one of the diagnostic criteria that it must. Inflammation of the optic nerve doesn’t always cause noticeable vision problems, however. Have you actually been checked to find out whether there’s any evidence of inflammation, or was this assumed unnecessary, because you hadn’t reported a problem? I expect the new guy will want to check, if it hasn’t been done already. All the best, Tina x
Hi Tina Well when I had my first major attack I was admitted to hospital for a week, and they dx me then as having tm, whilst there they did a test (forgive me as I forget what it’s called) but it’s where they stick numerous patches over your head/face and get you to watch a flashing tv screen! Sorry for the description! Anyway that was all clear and showed up no problems, and equally haven’t really experienced any problems with my eyes and sight other than I take it the usual tiredness anyone would get! Liana x
Hi I have had one spinal lesion which has left me with weakness and spasticity in the right leg.
What were your relapses like and did you recover well from them? where one or both legs effected. and have you had a lumbar puncture. Sorry for all the questions but your story is similar to mine.
hi i was originally dx with TM until relapse a few months later but i must disagree with tina that TM is a disease in it’s own right as i spent many an hour on the TM websites and forums before a def MS dx and also the young showjumper at last years paralympics had TM which she had for many years and only affected her lower limbs
Hi Moyna Yes I had a lumbar puncture which came back positive, in 3 years I’ve had 2 major relapses and 2 minor ones. The first major being the first I was numb from the waist down, was admitted to hospital where I was dx with transverse myelitis, I fully recovered after only a few weeks, they treated me with some iv steroids whilst in hospital. The next 12-18 mths I was fine then I suffered a couple minor relapses which slowed me down but didn’t stop me doing anything, then oct last year I suffered the worst came on gradually over a few weeks, legs went from under me a few times, left leg the worst, numbness, pins and needles very weak legs, then I could hardly walk at all even with aids. Was signed off work for 4mths it took me that long until I could get around any reasonable distance still with the stick and following 3 rounds of steroids and Physio. I have continued to improve, on various different meds - Rebif since oct last year, amitriptyline, Gabapentin, oxybutynin and amantadine, also continued with the Physio, but to date I feel I’m only 70% better! I feel both my legs are now almost as bad as each other. As long as I relax and don’t over do it I can walk around fairly normal, but after 10mins on my legs I have to rest again otherwise they get worse and I basically end up on the floor unless I sit down. So as u can imagine, I can’t pop into town or into tesco’s as I can’t stand/walk for long enough, and I can’t get my head around getting in a wheelchair or on a mobility scooter! I’m 29 and feel really down about it all - I don’t know if this is me now or if I will continue to get better?! It’s been a rough 12mths! Liana x
Hi Anon Have your attacks been focused just on your spine too, or have you got lesions on both your spine and brain?! Liana
Transverse Mylitis is sometimes discussed in the early stages of MS when the function of either arms or legs are affected. Depending upon where the spine lesions are anything below can be affected including the diaphram. I have no lesions in my brain but several from C2 downwards in my spine - I have a Transverse Mylitis diagnosis and I also have a definite MS diagnosis. I’m in a wheelchair, but I’m still able to work fulltime. From time to time I have breathing difficulties which are what my relapses usually consist of. I have no optical neuritis symptoms, but on-going bowel and bladder problems.
I hope you get some answers from this consultant as then you can be linked into medications, support services and financial help to cope with the debilitating elements of both diseases.
Hi Mary Thank you for your info, that gives me an insight into other possibilities, and yes I do hope the specialist can give me some more answers and that they can get my med’s sorted and get me on the right track soon! Thanku again Liana x