@Caseyxo 

Last reply

Caseyxo

And its official

Hi Everyone, So sorry newbie here, but have a few questions hope someone can help or even just say Hi. Jan 2018 I had my first MS attack which was pretty severe with a 2 night hospital stay and no idea what was happening. I had severe pain in my lower back, no balance and numb in both legs. It took several months but I made a full recovery. The MRI showed a lesion in my lower spine and a few in my brain. July I had another MRI and no changes were detected. I stayed as CIS diagnosis until today. Whilst CIS was scary, there was the land of denial and what if i never go to MS, so although not completely out of the blue I have been dragged kicking and screaming out of CIS denial land. My last MRI in May, confirmed 3 new lesions in my brain since the Jan 18 one. Lesions without any symptoms seems very scary :( I have been sent a letter to give me this news and asks me to contact my MS Nurse to discuss Copaxone. Last year when everything was more up front in my mind, I made a decision not to start treatment especially not what feels like a "starter" DMT, and would look into other options, until I was allowed one of the more effective DMTs. Am i mad? The letter has no contact details for the MS Nurse, is this usual protocol (Salford Royal Hospital)? I have emailed the consultants secretary for details, but not quite sure how I can speak to someone. What do I need to do now? Do I need to tell my employer, DVLA? Thank you, Casey
@wobbleone

You don’t have to tell your employer except in certain lines of work. It may help them to understand and make allowances for you through any relapses or symptoms though if they know. Unfortunately you do have to tell DVLA and will usually get your licence replaced with a 3yr Medical one. I would hope you will shortly receive an appointment with a nurse to discuss your treatment. It is ultimately up to you whether or not you accept treatment at this stage and you should also be able to discuss what options are available to you. Good luck finding a treatment to suit you.

@Stumbler

Hi @caseyxo , I'm sorry that you now have "full membership" to our club, rather than the "limited membership" of CIS. Yes, it is scary to think of what's going on in our brains, some of which may not be beneficial to us. But, the positive out of this is that you are being monitored, so this adverse activity is identified and action can be taken. Yes, you are right, Copaxone is a starter DMT. It's one of the original DMTs from 20-30 years ago. There are better, and more efficient, treatments now available. So, why risk accumulating further damage before you "trade up"? Do your research about the available DMTs, so that you can participate actively in any related discussion with your MS Nurse/Neuro. The following website is a good place to start. Follow the "Treatments" link :- https://support.mstrust.org.uk/shop You should have been supplied with contact details for your MS Nurse. They should be your first point of contact for all things MS-related. You'll find some details for them from this map of MS services :- https://www.mstrust.org.uk/about-ms/ms-services-near-me Useful advice from @wobbleone above. So, there are a fair few of us here, a few thousand, with (hopefully) helpful advice or just wanting to say hi......... 😉