Hello everyone, I’ve been viewing posts for sometime and finally decided to post my own story - I will try and keep to a minimum! I’m 39 years young!! Had glandular fever when I was 15 years old. July 2007 - life very hectic with lots of stress, received Hep B vaccination for volunteer work and was very physically fit. Onset of symptoms sudden following cold - dizziness, fatigue, numb toes on left foot with definate weakness in left hand side of body, problems with bladder control. Treated for vertigo - symptoms ongoing so referred to neurologist . MRI results: she has some high intensity specs in the right periventricular region, in the left parietal region and right temporal region. Additionally there is some suspicion that there is high indensity spec seen on the left middle cerebella peduncle. These are in line with a kind of demyelinating condition. I was discharged and diagnosed with acute demyelinating encephalomyelitis. Feb 2008 - symptoms continued however dizziness eased - I carried on always knowing deep down this was something other than ADEM. 2009 - symptoms continued however dizziness returned after period of stress - returned to hospital - consultant diagnosed me with MS however VEP and LP (raised protein) negative so I was then told possible MS. Referred to MS nurses. No change to MRI. October 2010 - first attack of extreme fatigue with some new symptoms,very sharp pains in eyes and top of head etc etc, returned to hospital. Locum consultant prescribed me 100mg amantadine and 10 mg of Nortriptyline (per day). He was adament I was still suffering from ADEM. I attended 6 monthly appointment soon after - another locum consultant considered this to be my second attack of MS - MRI showed no changes. May 2011 - second attack of extreme fatigue with new sensory symptoms including burning sensations in right leg. I attended 6 monthly appointment in June 2011 and consultant prescribed pregabalin - MRI showed no changes. I’ve not started taking pregabalin but continued with amantadine and nortriptyline. Vit B12 levels normal. I’ve recently joined a private healthcare plan through work and I’m going to ask to be referred to see an MS specialist. I want to ensure I’m receiving the correct advice and treatment. The so called medical experts I have seen to date do not fill me with confidence nor do comments from MS nurses about the serious lack of MS knowlege general neurologists have. Thanks for listening Cay
Hi Cay, and welcome to the site Just had a week look at my “bible” AKA Magnetic Resonance Imaging of the Brain and Spine (Atlas, 2009). Some thoughts: - the vaccination, the cold (i.e. virus) and the timing of the first attack are strongly suggestive of ADEM. (However, my book doesn’t list Hep B as one of the vaccinations that can triggers ADEM. It may not be an exhaustive list though.) - the raised protein in your LP is consistent with ADEM. - your MRI hasn’t changed: lesions from ADEM usually reduce in size or resolve. - you are having new episodes: this is uncommon in ADEM. - your MRI hasn’t changed despite new symptoms: if it was MS, there would normally be new lesions. However, that depends on the quality of the MRI and on where is scanned vs symptoms. Have you had your spine scanned? - the negative LP is not consistent with MS, but not everyone with MS has a positive LP. - not everyone with MS has positive VEPs. (VEPs wouldn’t be a good differentiating test anyway - ADEM often causes optic neuritis in which case the patient will have positive VEPs.) I can see why the neuros aren’t sure! I agree - time to see a MS specialist; get some answers! Btw, if amantadine isn’t doing much, ask to try modafinil. Like all drugs, it doesn’t work for everyone, but it’s been a lifesaver for me whereas amantadine did nothing. You mention pregabalin. I’ve found it to be absolutely brilliant for neuropathic pain (including burning), although it did take a few weeks to get used to the side effects. Final thought - what is your vitamin D level? If it’s low, it might sway the neuro towards MS. Karen x
They don’t know what causes fatigue: the brain having to work harder (people with MS use far more of their brain to do tasks than people without MS), the brain having to work around lesions / find new routes / fight & repair inflammation, or fatigue being the result of damage to gray matter which doesn’t show on standard MRI. The thing is - none of these is visible on MRI. But fatigue is oh so real You can get your vit D level tested via your GP (it’s a simple blood test). Hopefully the new neuro will order a spinal MRI, and everything else that’s needed to work out what’s going on… Kx
Should have said before… This is from my MRI book: “The MR appearance of ADEM is indistinguishable from that of MS, and some patients initially diagnosed as ADEM go on to develop exacerbations of their neurological symptoms and are reclassified as MS.” Kx
Well, I suppose it’s better than “not sure what it is”
The “mild” bit REEEEEALLY p’s me off though. There is no such diagnosis as “mild MS”! (Mild RRMS maybe, but not mild MS.)
I know this might sound a bit radical, but you could get a second opinion on the radiologist reports - specifically ask a neuroradiologist to review both sets of scans to see if there have been any changes. A lot of neurologists really don’t know a whole lot about the brain & MRI. My own neuro (a very well respected MS specialist) told me that one of my lesions had resolved, but didn’t realise he was looking at a different part of my brain! (The lesion was still there, a couple of slices down.) You’d probably have to have a very supportive GP to get this done though.
It might get you a confirmation of MS, but it sounds like it wouldn’t get you DMDs just yet. I guess you’ll have to toss up the pros and cons of potentially getting a diagnosis and potentially p’ing off the neuro who may not prescribe a DMD for you anyway. Would it make a big difference to your life to have a definite diagnosis? If yes, then maybe it’s worth it?