@Kafka 

Last reply

Kafka

Bad neuro appt...

Hi guys I had a neurology appt last week and I've been told I can't have any more DMDs. I've tried Copaxone and Tecfidera with bad reactions to both. My neurologist took out the option of all the interferons right at the start. But because of my reactions and previous mental health problems I've been told that's it. I've been having some serious non stop 'headaches' that have resulted in me blacking out a lot. Just for a second or two but for me it feels like eternity so my neurologist has increased my Gabapentin (I'll be on 1200mg in 6 weeks) and has said I need an MRI but that's it. I don't know where to go from here. I mean, once I get the results of the scan in December what exactly is going to happen? If I can't have treatment now, that's going to be no different in December. I'm losing hope for my future in a way. I don't want to go to any more appts after this. I just want to be left to live my life as best I can. But the MS is ruling my life atm (as well as other things. Don't worry about those). I can just about keep my eyes open after nearly 3 weeks of sleeping. The increase isn't helping that and I had an optician appt at the beginning of this week. I couldn't see any of the letters. They were all jumping about and going in and out of focus. My optician is really worried and is hoping it's just the increase but he's not sure. I have to be tested again once I've fully adjusted. All in all, I'm scared and that's the end of it. Sorry about this being a bit negative. I've been trying to be as positive about things as possible but I don't have anyone to talk to about this properly. My friends are great but they don't have MS so can only listen really. I could go with some advice (as usual). Thanks
@Stumbler

@kafka , I'd do some research to find out who the best MS Specialist is in the region. Ask your MS Nurse, the local branch of the MS Society, even fellow MS sufferers. Then ask your GP to refer you to them for a second opinion. It's your right to have a second opinion.

@jonnydrama

Surely you can't not use anything? Like @stumbler says get a second opinion. The difference from one doctor to the next can be ridiculous. As far as I'm aware they won't prescribe it, but have a look at LDN. I've heard nothing but good things from people I've spoken to about it in the past. Obviously you'll need to check and see if it's compatible with other drugs you take and if you have previous mental health issues. You have to 'go private' (as in you have to buy it from certain pharmacies) but it is legit, it's actually used as treatment for something else, just not on the NHS list as for MS.