Last reply 3 years ago
RESRRMS

Hi there!
I wonder if any one could share their experiences on this.
I recently went to my neurology appointment where we discussed medication, I was assessed and we looked at my previous MRI results.
I saw a different neurologist this time and she interpreted the MRI scan again. She stated that I had a big lesion in my brain and a fairly big one on my spine. Also, there was a few dotted along the side of part of my brain. She also saw some floating lesions. She thought that these may have been caught in their infancy so may have attached themselves somewhere or gotten bigger or even gotten smaller by now, she doesn’t know obviously.
She believes that I have Rapidly Evolving Severe Relapsing Remitting MS (such a mouthful) but she has scheduled another MRI with contrast to make sure of this. Plus another MRI is a requirement for medication.
However, she stated that I needed to have a blood test to rule out other things like virus’s but also MS mimics. Has anyone else had to do this? I asked her if she thought that it wasn’t MS then but she was honest and said its 99.9% MS. I left feeling a little bit confused?
Just want to know if I am alone on this one or if others have had this experience.
Thanks in advance!
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chloeautumnx
3 years ago

Forgot to say that I have been diagnosed with MS which some of you may already know, back in January 2015 🙂 x


stumbler
3 years ago

@chloeautumnx , rapidly evolving could also be called aggressive. And, aggressive MS would require aggressive treatment.

Your Neuro just wants to ensure any other causes have been eliminated, so that they’re comfortable in suggesting a treatment option for you.

The requirement for an MRI with contrast is to further confirm their diagnosis.

They just seem to be looking after you. 😉


chloeautumnx
3 years ago

Thanks @stumbler! I have had 2 possibly 3 relapses in 4 months and I can’t fault the team at all. Everything is moving fast and that’s great. I guess I was just confused that I have been diagnosed with MS to then be told that they are just wanting to rule out ms mimics before medication. But I think I’m being a bit stupid! Ha ha. My neurologist is recommending Lemtrada at the moment which I am pleased about as I have heard good things. either that or Tysabri. X


stumbler
3 years ago

@chloeautumnx , here’s a comparison of both of these drugs. It was compiled by the respected team at Barts in London :-

http://image.slidesharecdn.com/nzvsaz-140815040728-phpapp02/95/natalizumab-vs-alemtuzumab-1-638.jpg?cb=1408093678

Natalizumab is Tysabri and Alemtuzumab is Lemtrada. 😉


chloeautumnx
3 years ago

Thank you @stumbler, that’s really helpful! What are you on if you don’t mind me asking? X


stumbler
3 years ago

@chloeautumnx , I have no secrets. I’m SPMS, so I’m presently on a “wing and a prayer”, where I have been for the last 5 years. 😕


chloeautumnx
3 years ago

I like your name of your medication! 😉
So as I understand it Lem means that I have it for 2 years (5 days then 3). Then what? Is there a break? X


stumbler
3 years ago

@chloeautumnx , as I understand it, there is five days of infusion, followed a year later by a further two days of infusion.

I believe the future strategy is determined by you and your MS, but I feel I should leave a definitive answer to @us-emma, who is our Lemtrada trailblazer. 😉


chloeautumnx
3 years ago

Thank you! I actually read Emma’s blog earlier on this morning about it. Well some of it! 😉


us-emma
3 years ago

Hi Chloe,

Yep your right, 5 days of treatment initially, wait 369 days (and improve during this time:)) then three days of treatment.

I have taken both Ty & Lem. The main difference is that Ty slows the disease. Lem halts the disease & allows the body natural repairative processes begin.

This is a Huge simplification but the basic science.

With your type so MS it is even more crucial to consider Lem strongly. I am happy to answer any questions 🙂

@stumbler- I am about to interview a woman from Indiana who had Lem after 30 years of disease. She was wheelchair bound. After 3 treatments (over a period of time) she now has an active life with no use of assist devices. The ideas about inflammation in SPMS are changing.

Patent your wink & prayer as a mood lifter & positive attitude punch & keep an eye out- things in SP are a changin’ for the better!

Take care,
Em


us-emma
3 years ago

Shoud read wait 360 days… On a tablet…


chloeautumnx
3 years ago

Thank you Emma that’s great! So do symptoms ever wear off? How often do you need to keep taking it? X


stumbler
3 years ago

@us-emma , my attitude is more philosophical than positive, but thanks for your words. 😉


us-emma
3 years ago

The symptoms of MS or symptoms of Lemtrada?

With Lem you may have symptoms during infusion. I had one headache, minor, and no others. The drug is out of your system in 3-4 weeks so no other symptoms for the drug are possible.

Lem also carries risk of 3 possible side effects through the next 5 years: Thryoid issues: 35% chance. Low platelets 3-4% risk. Kidney disease 0.3% low but the most serious of the 3.

See this post:
http://lemtrada.blogspot.com/2014/12/efficacy-of-lemtrada-do-people-get-it.html


chloeautumnx
3 years ago

Sorry Emma, I mean symptoms of MS. Do they come back? Probably a silly question!
X


us-emma
3 years ago

No at all, just one we don’t have a complete answer to.

For the full breakdown of recent data on the topic see:

http://multiple-sclerosis-research.blogspot.com/2015/04/aan-2015-alemtuzumab-retreatment-rates.html

We have data as fat back as 16 years. Not all who were treated this far back have remained in follow up (or aka ‘extension trials’). Ten year data shows that approx 50% of those treated 10 years ago with the initial two doses have not needed any additional meds and their MS disease remains in remission.

At year 7 about 50% get a third dose.

When and if you need additional doses depends on your personal response- meaning if you have a relapse you get another 3 days of Lemtrada.

But research show that on average dose #3 is not needed for many years. Leaving you free to live a normal life, no meds, have children without worring about side effects of MS drugs, etc.

As time passes, more ppl will use Lemtrada and we will increase our knowledge around the parameters of retreatment. We will also continue to get long term data from those who remain in the extension trials.

This is great news. The better news for the individual is that Lem will be there when you need it, on the schedule you need it.

I will repost this in another place for others to see.

Thanks for your questions 🙂

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