Ok, so here I am, waiting for 8am so I can call my gp! I saw my ms nurse 2 weeks ago due to altered sensations in my arms & unable to grip properly who put me on oral steroids for 5 days, but now I have trigeminal neuralgia and have lost my sense of taste and my whole face is numb! Diagnosed 12 1/2 years ago, I class myself as lucky - my MS has been fairly slowly progressing. After a relapse a couple of years ago, I have progressed from Tecfidera to Aubagio, due to low lymphocytes, but 9 months in on Aubagio I’m relapsing. I changed my diet, I’ve been taking vit d, k2 & magnesium but trigiminal neuralgia started again on Saturday so the out of hrs doc has prescribed carbamazapine but need to see my gp to pass a referral to my neuro (which I already have on 29th December due to other new symptoms from 2 weeks ago!) What are my option for me now? I don’t think I will qualify for Lemtrada unless they will count these 2 different symptoms as separate incidents! But then again I already have an underactive thyroid, which was stable for 20 years, until I changed to Aubagio! And I’m not sure about injecting myself so the only other option would mean monthly iv meds at my hospital, not an option I want as a long term treatment as in 5-10 years me and my husband want to travel, although I think there is a new 6 monthly iv treatment about to be available at my hospital but not sure as it was just a whisper from my ms nurse! I have been in contact with the Coimbra Protocol physician in Ireland and I’m considering all options… Any thoughts? Thanks xxx
I am sorry that your MS is making its presence felt - that is so not what a person needs at this time of year or any other. It is a bad feeling when RRMS that had been fairly quiet suddenly gets alarmingly active - I remember it well and really feel for you.
It is nice to know that there are more effective DMDs in the locker although, as you say, there is none without its drawbacks. I think all you can do is to think things through and keep an open mind when considering your options and getting your neuro’s advice. It goes without saying (but I’ll say it anyway!) that your best chance of travelling in the future is to stop your active RRMS in its tracks.
For what it’s worth, I wish I had moved faster when the Avonex stopped working. My resurgent MS had a couple of years to take lumps out of me before I started on Tysabri and reached calm waters again. Much of the relapse damage during that time was permanent. Hindsight is a wonderful thing, isn’t it? MS does not play fair, that’s for sure.
BTW, carbamazapine worked for me years ago when I had stabbing nerve pain with a relapse, by the way - I hope it takes the edge off your TN.
Thanks Alison, The carbamazapine is starting to kick in although I can still feel odd sensations inside my head! I’ve had TN before as well as no taste before too. After speaking with my MS nurse she has confirmed a relapse but it sounds like several of the big hitters wont be an option due to my current lymphocyte levels at 0.76, slowly working it’s way back up to above 1 after Tecfidera knocked it for 6, or should I say 0.48 ha ha. Tomorrow my ms nurse should be calling back with his thoughts/ideas so I’ll just have to wait and see and do plenty of research in the meantime. Merry Christmas! Sharon x
Hi Sharon It’s a bugger when the DMDs stop working. I doubt from what I’ve read that you’d be able to qualify for Lemtrada ever, potential side effects include lymphopenia, which you’ve already had from Tecfidera, and over or under active thyroid. It also has a very long half life in the body. And I can’t remember when you stopped Tecfidera, but my lymphocytes took over a year to get back to 1. And they are still only 1, two years after stopping the Tec. But there’s Tysabri. If your neurologist is able to get you eligible then that might be possible? Sue
Hey Sue, It’s almost 12 months since I stopped Tec! Whoa, time flies when you’re having fun! Ha ha. I realise my hypothyroidism is an issue, as is my lymphocyte count. Perhaps I’ll go cold turkey (excuse the Christmas pun) over Christmas! How does it work with employers with taking half a day off each month? I currently always make my time up for hospital appointments, but not sure if I have to with disability rights, although I dont obviously class myself that way…yet! Thanks Shazza!
When I last looked, your employer was obliged to give you the time off, but the law was silent on whether it needed to be paid time off. In a previous life I could have given references for this arm-wavy assertion, but not now I’ve been out of that world for a few years I claim no current knowledge. You might like to do a bit of Googling on Equality Act 2010/time off for medical appointments. If I’m out of date on this one, please let me know the up to date position, please!
Update - just spoke to my employer who has advised it is just the statutory 5 days, of which I’d previously had 2 (in the last year), but apparently they can allow special dispensation, at their discretion! Let’s hope, given the season of good will they decided to help! I have an appointment on Friday to assess me with my ms nurse who will feed back to my neuro who will then decide if I need another MRI and what choice of next treatments are available to me. I’ll update if I remember! Ha ha Sharon x
A new update! My employer has decided to give me a special dispensation of an extra 2 weeks full salary, so that’s a blessing at this time of year. Pressure off…lets see what my MS nurse has to say on Friday! Fingers crossed. Sharon x
New update…the wheels of neuroscience are turning quickly for me at Coventry! I had a phone call at 8.30 asking if I could go in at 10.30 today. I called hubby back from work, who had to cancel his emergency dentists (bless him x), and got ourselves over quick sharp. The outcome was not quite as expected… Apparently my symptoms are not a new relapse but just worsening of symptoms for which I was prescribed steroids for last week. However, they are booking me in for a mri and I will have to wait for the results before a decision on if I can change DMDs or not. For now, I’ll rest up and make the most of relaxing now I’m signed off for the week. Sharon x