Hi all,
Was away on holiday and came back to a letter and results of my second MRI.
My consultant has said that the lesions in my brain have not changed but now they have found a few lesions on my spinal cord as well as which they don’t know if they are new as they didn’t scan that area on Jan. They also seen inflammation in spinal cord. The letter also states that the lesions are not active. Not sure what all this means a bit lost as I am still having symptoms and they don’t seems to be going away, if anything they seems to be getting worse. Going to try contact the consult for more information.
Have my first appointment with MS nurse tomorrow to discuss two medication that the consultant has said would be best for me. Dimethyl Fumarate and Alemtuzumab. Not sure what to do just so fed up with it all at moment.
Keep dropping things and my memory is terrible. My other symptoms are pins and needles all over my body, worse in my feet and legs. Burning sensation again feet and legs worse. Muscle seizing, fatigue, sight issues depending on how light it’s is. Numbness randomly over my body and problems with my feet no matter what footwear I have on.
My doctors has put me onto 25 mg Amitriptyline but still not helping, maybe need to speak to him and see what else can be done.
Sorry just struggling at moment and starting to feel down as mostly house bound as no car at moment.
Just wanted to drop you a quick note of support and to say hello.
Im also recently diagnosed - and have lesions in my brain, brain stem and spine (which cause numbness/ pins and needles). Sorry to hear your symptoms remain on-going. Fingers crossed your Neuro can find something that works (FYI - 5 days steroid tablets helped me).
Re. “Active” lesions - I think what this means is that none of the lesions were enhanced with contrast (which I assume you had injected?) as being active attacks from your white blood cells against your nerves - so all of the lesions are ones from attacks prior to the scan - and it is some of these old scars which are causing your problems. The sticky post at the top of the board has good explanations.
It sounds as though you have an excellent team who are suggesting two very good drugs. DF is a “more effective” tablet and there are lots of people on here with positive experiences. Look up some of Paolo Smythe’s posts (think I have his name right!). Alemtuzumab is “highly effective” blood infusions and is my poison of choice which I’m due to have on 14 August. Best resources for this are the facebook group, a blog by a lady called Tracey Doust (Google "Tracey’s Lemtrada journey), Shift MS (where it is the drug of choice for many) and my favourite, David’s Campath story (from a guy who took part in the original trial and is doing brilliantly). Choosing a DMT is tough- balancing act between drug efficacy, administration ease and side effects. I decided MS scared me more than the Cary Lentrada side effects so that what I’ve plumped for.
hope some of that is useful. Good luck!
k xx