Feels like I've only just been told but it's been 7 years

Everyday living
1

I got dx’d with “mild MS” back in 2010 (BS we all know there’s no such thing), no help, tell no one etc, come back if it gets worse. etc etc

I’ve had a really good MS nurse since 2014, mild relapse in May 2015, MRI with contrast Sept 2015, bad relapse in January 2017 and another MRI with contrast about a month ago. This revealed a new lesion. I went to see my neuro and MS nurse last Wednesday. I was horrified to see the amount of lesions and to also learn that they wanted to start me on DMD’s, 5 of which are injectables and 2 are tablets.

It’s scary stuff and feels like I’ve just been d/x’d. Maybe I’ve been in denial, maybe positive mental attitude but it somehow feels real now. They want me to start DMD’s and anti depressants for the mood swings. It’s a lot to take in. More of a vent than looking for advice.

2

It’s always good to give vent. I find just writing it down works for me.

Although things were a bit vague back in 2010, it sounds as if you’ve got a good MS team now Nelster.

Best of luck with the DMDs.

Ben

3

I can totally relate. My first incident was in 2010 also, although at that time it wasn’t confirmed as MS because of uncertainty of it maybe being an isolated incident. Had another in 2014 (but no sign of new brain lesions on MRI), then had another in June last year and MRI’s showed several lesions on brain and spine,which led to my diagnosis in August, then the last one in September.

Just had results of more lesions on latest brain MRI and I’m seeing the Neuro in May but I am very nervous of what treatments are going to be suggested. I just keep hearing of so many bad side effects which seems to lead onto even more medications that I’m not sure if I want to be on anything!

4

ok so quite a lot of people are nervous of starting a DMD.

These are strong meds because we want them to give our ms a good kicking.

limbo was probably invented to give you time to read up on it!

i take tecfidera.

used to have copaxone.

it’s pretty nerve racking to take the first pill or do the first injection but only takes a minute.

as for side effects, i am closely monitored with 3 monthly appointments to see my ms nurse.

if you eat before tecfidera you’ll be fine.

if you rotate the injection sites with copaxone you’ll be fine.

there is a lot of information on the MS Trust website.

carole x

5

slightly o/t but do neuros prescribe the drug that they get the best financial deal from the Pharmaceutical Companies?

And do the Pharma. Companies also have access to any future brain scans that are taken of patients on ‘their’ drugs so the can evaluate the efficiency or otherwise of the drug?

6

To cut a long story short, something happened when I was 7 that was dx’s as meningitis, though looking back the symptoms were the same as my last relapse. Had an incident in 1999 that my gp described as a virus, then the same in 2003. New gp got scans done and when I went for the results they said the mark on the scan was an “artifact”. Had MRI for tinnitus is 2008 and from an ENT point of view it was fine but I might want to consider investigating the demyelination. Hence the dx in 2010.

Now to consider DMD’s and also anti depressants for my moods, is a bit daunting and disappointing. I’ve also promoted the positive mental attitude thing and mind body connection but it appears that was just denial. Ah well, is it wine time yet??

7

I don’t like the bits I’m reading where they say it works but they don’t know how or why?

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It doesnt work like that. You are so wrong.

my neuro wanted me to have lemtrada, but there was not enough funding. The hospital drug committee couldn’t afford the terrible price that it is now.

what makes you think that NHS neuros are bribed by Pharma?

9

I’ve been pretty much the same, as in ‘positive thinking’ but in reality hiding behind denial!

Until my last relapse in September I felt (naively) like I’d pretty much aced it: nothing was going to stop ME and it was all just a matter of my attitude to life… Hmm… Not so easy now tho as this relapse has really hit me hard: struggling to walk, numbness legs, pain in back,confused, muddled, the works and getting new symptoms appearing every 2-3 weeks. :confused:

Oh my gosh yes it is DEFINITELY wine o clock!

10

It all depends on how aggressive you neuro thinks it is. If things aren’t too aggressive, then there’s the older first line drugs, copaxone, Rebif, avonex, betaferon,. I did really well on Rebif for 16 years and then I got a new neuro and a nasty relapse. I had an MRI and suddenly, I had 5 more lesions and one big one and 2 in my neck. She thought I should move onto a newer drug. She reads the Barts blog each day and so do I. I thought Tecfidera may work better. I didn’t like it at all. So she gave me the option of 1more month to see if the side effects improved or Gilenya. So far I’ve stuck with the Tecfidera, I hope theres no evidence of disease activity (NEDA). I can’t work at the moment as I can’t stand up for long enough for big works, like Beethoven 9.

My neuro really wanted alemtumzumab, but it was too excpensive for our local hospital and what would happen if it didn’t work? To be honest, I applied for the original trial in 2001. But Professor Coles didn’t think I qualified as I was responding well to Rebif.

this is a horrible disease. At least we can hold back progression now, for those of us with RRMS or benign or mild ms. I’m a musician and Jacqueline de Prez’s early death and the loss of her musical abilities is very much in my thoughts. This is a huge hole facing me at the moment. The grief is too much to cope with right now.