Hi everyone
I was diagnosed with RRMS last August 2014. My consultant felt there was no need for any medication at that time since I have another auto immune disorder which confuses everything. Since Aug 2014 Ive had one meeting with the MS nurses.
Anyway im confused. Ive joined a local MS support group and people ask, where are your lesions, what medication are you on, what are your symptoms, when was your last relapse? I haven’t a clue!!! I don’t know if Ive ever had a relapse. About 15 years ago I had sight problems which I put down to migraine, I now know it wasn’t migraine. I have a dodgy leg which twitches and spasms at night, I trip and fall sometimes, my left foot drags if I get tired.
I phoned the MS nurses this morning and they have me booked in with my consultant in Aug 2015. What do I need to ask? I need to take control and keep as well as I can so what do I do?
many thanks for any help
Janice
Hi janice it is a really hard question you are asking as all of us have many different symptoms some with or without pain and the various implications that go with them. Have you had an MRI scan or lumber puncture if so perhaps the consultant can show you your lesions if you have any , if you are in pain or are suffering with fatigue then you can ask for help with that , and as far as relapses go i don’t think anyone is really sure when they happen it can be just a worsening of currant symtoms or the onset of new ones. Sorry i havent been much help but i am sure you will get plenty more advice.
Take care .Katy
Thanks Kathy
I had an MRI about 1 1/2 years ago and lumbar puncture this time last year. I think that when I met the consultant in Aug and he gave me the diagnosis I didn’t have any knowledge to know what to ask. To be honest since I have another RARE complaint, retro peritoneal fibrosis, I just thought oh well here I go again, something else to work out.
Perhaps Im a mild case? Perhaps Im getting worse? I think my walking has become much worse in the past year. I fell very badly 3 times last June and am now more nervous about being out on my own. I fell down the stairs (well 3 steps) in march this year and it took weeks to get back on my feet properly as we think I broke some small bones.
I suppose I just need to start making lists of ailments and see what he says in Aug.
Thanks again kathy
Janice… if i were diagnosed with RRMS, the first and only question i would ask is, WHY THE FRACK AM I NOT ON TECFIDERA???
All the other stuff is irrelevant quite frankly.
I do not know why anyone would care to ask where your lesions are / were, how many, how big etc… lesions come and go; some cause symptoms, some do not, some symptoms occur due to no apparent lesions at all. And so, so what?
Your last relapse… well that could be the last time things started to feel iffy and didn’t right themselves within a few brief days.
What are your symptoms… well someone might ask so that they might recommend meds to manage their effects, but again, as per the lesion question… they can be so diverse in severity and nature, it is pretty much no one’s damn business, unless you want to let them know.
Sincerely, with the prevailing advice being to get on meds ASAP when diagnosed RRMS, the only thing you should take from a meeting with a consultant (aside from answers to any question YOU might have) is a prescription.
Unless you have some kind of personal complication that would make taking DMDs unwise, i would seek the services of another MS specialising neurologist!
The very best of luck to you.
I would agree with all the above except that I wouldn’t be asking why I’m not on Tecfidera alone, I’d want to know why I’m not on ANY disease modifying drug. You say you also have another AI disorder which complicates things. I would still expect there is one of the DMDs you could take. There are really so many nowadays. Plus you should perhaps get a referral to physiotherapy. That should help with your worsening mobility etc. you could also get help from physio with your draggy foot (if it’s foot drop you could see if you’re in an area where the NHS will pay for FES). Some of this info you may be as well discussing with the MS nurse, depending how good / approachable / practical your neurologist is. In my area I have separate appointments with MS nurse and Neuro. You maybe need to be approaching some of these things from a non-drug perspective given your complex health issues. But I would certainly see if you can get a DMD regardless.
Sue
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That was my point, except i labour under a bias (a deserved one i hasten to add!)
But thank you Sue for clarifying my attitude 
Thank you everyone and sorry for the delay in replying
My consultant originally said (in Aug 2014) that he wasn’t refusing to prescribe BUT thought that because I was a bit complicated he wouldn’t do it yet.
I think I need to make a list. Some days Im fine and others Im not so I need to list how I am on a bad day - you know, all the little things that I would forget when face to face with a consultant.
I think so far Im fairly good but if the past 3 years have taught me anything its that health can change overnight. We cant be complacent. I have retroperitoneal fibrosis which can be debilitating but again mine seems under control BUT I have to be proactive and chase hospital appointments etc. My MRI also showed up a swelling on the side of my face which turns out to be a pleomorphic adenoma (parotid/salivary gland tumour), again luckily its benign but will need removed so I have to take control.
I know nothing about MS - Im here to learn so all advice is welcome.
Take care folks
Janice
Hi Janice
Like you I was diagnosed RRMS last year.
I think you are right - keeping some sort of diary is critical. I have a simple notebook and just write a few words each day - balance rubbish, numb toes, bad fatigue, pins and needles in face, felt really good etc etc. it has really helped me recognise patterns and activities which seem to exacerbate symptoms. It helped me identify that I had a minor relapse earlier this year.
Also, I find that the outcomes of the meetings with neuros depend almost entirely on what you can tell them - so records are really helpful. I also agree that you should ask them to show you and explain your MRI results if you have had one. This will help you understand things better - it helped me.
Lastly, he was in no hurry at first to offer DMDs - although he did introduce the idea for me to think about. It didn’t take me long to decide that they were an obvious choice for me. So I would also recommend making sure you have a full conversation about your options - it can take a while to put funding etc in place so if you are going to start, the sooner you agree then the sooner you will get them.
best wishes with it all
David
Hi David
Thanks for your reply.
Its interesting that you seem to have had meetings plural with your consultant yet since my diagnosis a year ago Ive heard nothing. Dont know if this is a good thing or not!! I have met with the MS nurses once and since ringing them again this week I now have another appointment with my consultant in Aug 2015 - just one year later. I wonder how long I would have waitied for an appointment if I hadn’t phoned.
I like your diary idea and intend to start today.
Thank you
Janice
Hi janice
i think you have done the right thing in developing contact with the ms nurses. In my experience they are the most effective route to the neuro - better than the gp - despite him trying really hard. I think you have to be slightly assertive to make sure you stay on the radar - but I really can’t complain at all about my treatment.
by the way, I started on Avonex but still had significant side effects after 45 weeks. I have now been on Tecfidiera for nearly four weeks (still only 50% dose till next week) but no side effects at all so far - nothing! So fingers crossed.
Fingers crossed for you too
David