probable diagnosis

Hi All,

I am a bit confused about my probable diagnosis. I presented with left leg numbness, was given IV steroids (which caused all sensation to return.) I received a spinal tap which was negative (no oligoclonal bands). My brain MRI is normal. My cervical spinal cord contains 2 patchy lesions. I was tested for everything: lupus, sarcoidosis, Lyme disease, thyroid titers, ANA antibodies, etc. everything came back normal. The neurologist told me there is a 50% chance that I will never have an attack again, or a 50% chance I will have an attack and become a quadrapeligic the next time! He wants me to take Copaxone ASAP. What are your thoughts? Another neurologist is not sure I even have MS. However, the neurologist who wants me to take medication scared me to death!

Just shows you how much empathy and bedside manner some Neurologists’ have. I agree with starting DMDs ASAP; the likelihood is they will reduce the chances of you getting another attack. The rest of it I think is very questionable and does not agree with FACTS.

After 15 years 25% of PwMS end up having to use a wheelchair or to put it a better way 75% still remain ambulant; sounds better don’t it?

I’m one of the 25% but still really enjoy life; my chair does not stop me doing anything I want to. Alright I’ve had to give up hang gliding but heh; when one door closes another opens.

Good luck Emma.

G

Are you sure he didn’t say that you had a 50/50 chance of getting another attack and that, if you did, it just might be a really bad one? That sounds more like the kind of thing they normally say (and is also the - very good - reason why most of us on DMDs take them!)

Alison

Well, I hope you never have another attack love. X

Hi Emmalou. Sorry to read that you’re having a tough time in Limboland.

The diagnosis of Multiple Sclerosis does require a very careful and individualised approach because MS can present with a variety of symptoms and mimic a variety of conditions. Your diagnostic testing seems to have been thorough, but you don’t mention whether you have undergone Evoked Potential Testing.

That said, the MRI scan, I presume, of your brain, was clear, but you have a couple of lesions on your spine. When I initially read your post, Transverse Myelitis popped into my head. The reason I thought this was that an MRI scan for TM will show inflammation of the Spinal Chord which you have. TM also responds very well to IV Steroids, which you have.

The Neurologist clearly thought that you had experienced Clinically Isolated Syndrome (CIS)- a first episode of neurological symptoms that last at least 24 hrs and is caused by inflammation and demyelination in one or more sites within the CNS. This episode is a one off and may never be repeated. If so, that’s great news, although, it can be a precursor to MS later on. However, you have NO brain lesions, so you are actually at lower risk of going on to develop full blown MS, so don’t panic!

Personally, I would be very uncomfortable to take any medication BEFORE I have been clinically diagnosed with MS. That just doesn’t sound right. That’s like saying, we’ll treat you with chemotherapy even though you currently don’t have cancer.

A diagnosis of anything neurological needs to be made by an experienced Neurologist and before disease modifying drugs are considered, by one with experience of MS.

So, in concluding, I would be thinking:-

  1. Could this be Transverse Myelitis. If not, why not?

  2. Should I be considered for an Evoked Potential Test? If not, why not?

Sorry if I have waffled. I get a little carried away, sometimes!

Good luck.

Tracyann x