Confirmed Dx in Nov now not so sure

New diagnosis and before diagnosis
1

Please bear with me on this.

Today i met the ms specialist who confirmed i can start and use rebif until the BG12? drug is licensed in the Uk. This is the direction she pointed me in. She explained that there are no long term benefits on rebif just reducing the number of relapses. I was dx in nov by in her words, a competent and keen ms neurologist. So the dx was pretty conclusive. The lesions were on my vertricles, and had some, which i cannot recall lumber issue.

But, and a very big but.

I now have to another mri(with dye), and an LP and more blood tests… She told me that if no further lesions were present i would continue on above treatment, however if they are active i would then go onto tysabri instead, before moving onto something stronger which would require me to have a blood test to confirm whether im susceptible to a certain infection . Cannot recall the name but it has pretty severe side effects.

She also said they must rule out a more severe neurological disorder, before confirming 100% it is indeed ms, but she wanted me to start the DMD

I stopped her at this point and said she is confusing me.

Im hoping someone on here can help me understand a little (Karen) and shed some light on whats just happened.

2

Not sure about the more serious neuro condition they want to rule out but the second MRI is to see if the rebif is working I think. The dye will show up areas of inflammation (as far as I know) which would show that the Rebif isn’t working to reduce your symptoms. No inflammation would mean the Rebif is working and you can carry on. Inflammation means the Rebif isn’t doing the trick at which stage she would move you to Tysabri. Regular blood tests on Tysabri are essential as it can increase the risk of PML. The blood tests will show if you are increased risk or not.

http://www.tysabri.com/pml-risk.xml

it’s basically a brain infection caused by a virus (JC) which most people have and it normally doesn’t affect them. When using Tysabri this virus can end up causing PML which can be fatal but they evaluate your risk along the way and decide whether you can use Tysabri based on the risk you present.

Hope that helps.

3

I agree with meme.

I had to read what you’d written a few times to properly understand it (I think) so, if I’ve got this wrong, please correct me.

You saw a different neuro today? You’d originally agreed to start Rebif and move onto BG12 when it was approved, but this second neuro is saying that, while you can still do that, you might be better on Tysabri?

I think the more serious neuro disorder might be a bit of a red herring - I don’t think they would start you on a DMD unless they were sure it was MS. For now at least, it might be best to ignore it.

I would guess that the neuro believes your MS to be “highly active” / aggressive. If that’s the case, then most neuros would want to put the patient on the best available DMD and, at the moment, that’s Tysabri. (You’re looking at an ~81% reduction in relapses versus Rebif’s best ever result of ~46%, plus it significantly slows progression whereas Rebif only moderately helps.)

As meme has said, Tysabri comes with the very small risk of PML. The JC virus is a virus that about 54% (I think) of the population carry, but which the immune system keeps dormant so we don’t normally know anything about it. Tysabri suppresses part of the immune system and this can allow the JC virus to become active and lead to the brain disease PML which, if it goes unnoticed for long enough (months, not weeks, but I can’t remember exactly), is fatal. Once contracted, PML can only be stopped by coming off Tysabri, having it flushed from your system, and allowing your normal immune system to reboot. The damage already caused, which is similar to MS symptoms, is permanent. PML is the reason that people on Tysabri are monitored very carefully - any sign of any virus and the monthly Tysabri infusion is delayed as a precaution.

The chance of getting PML is effectively zero if you do not carry the JC virus. The blood test the neuro referred to will be the blood test for the JC virus, which everyone on or being considered for Tysabri has to have these days. Unfortunately, although the JC virus is normally contracted in childhood, it is possible to catch it as an adult so the test has to be done regularly and whether or not to stay on Tysabri considered. According to the latest data, the risk of getting PML is highest if you are JCV positive, have had steroids at some point and have been on Tysabri for between 2 and 3 years. This (highest) risk is approximately 1%. You can get more info and see the stats here: http://multiple-sclerosis-research.blogspot.co.uk/2012/12/natalizumab-pml-risk-stratification.html

It’s a difficult decision. There is no doubt that Tysabri is the best DMD available at the moment. Unfortunately, that comes with a very scary potential side effect :frowning:

It’s worth knowing that both Gilenya and BG12 have caused PML. It’s not as common, but the risk is still there.

If I were you, I would wait and see what the MRI reveals and take it from there. No point in worrying about things that might not happen!

Karen x

4

Well Karen, reading your reply has certainly made a few things clearer to me.

Although I have never had DMDs, I did wonder what the tysabri/PML things was all about.

You have such a good way of explaining things and even though it has been said before, i want to repeat it;

these boards are so lucky to such a person as you in our midst. Being dx`d with MS, or spending time in limbo, causes many people a kind of distress that only those who have MS can understand.

Thankyou Karen, for your care, kindness and the time you take to help ease our anxieties. Bless you.

luv Pollx

5

Hi there! I can see why you feel muddled by what is happening. Having been given a diagnosis and now to be told other tests are needed, is bound to set all your alarms bell off!

Our lovely Karen has offered a good explanation.

I hope things dont get any harder for you and that once on the right treatment, your relapses wain.

luv Pollx

6

Sorry i didnot put it across quite right This was all done during a long session with specialist yesterday. These were all her comments. Her biggest concern was that all my symptoms are sensory and i may have an aggressive ms and the lesions are highly active. She has said i will never recover the feeling in my geet or fingers as the damage has already been. I have also been referred to a dermatologist for the rash on my legs and arms, again not typical for ms. The skin appears infected and flared a yr ago. As you can see alot is typical ms and alot is not. Both my sons have spent time is hospital for brain trouble. The eldest who 9 was paralysed from the waist down at 2 and spent 2 wks in hospital before full recovery. My youngest who is now2 was under hospital investigation from birth for ventricle problems, where my lesions are, and was discharge after weekly mris at 2 months old. We will not know until he is older the consequnces of the early damage. We were advised to abort him at the lattlest possible pregnancy stage. As you can see there are alot of coincidences.

7

How confusing for you :frowning: And all your own problems on top of your sons’ :frowning: I hope the new tests sort things out for you. Kx PS @ Poll: thank you!

8

Thanks for the kind words and info to all.

Like i said its very worrying that there could be an underlying genetic problem with me and my boys, and that is my main concern now. I do not want them to go through what i go through on a near daily basis. My 14yr old daughter has never had a problem whatsoever.

This is the first time ive really been ill in my life (aside from kidney stones 3 times) and its knocked me and my confidence for six.

Ive also found out during these neuro appts that i have spina bifida occulta which was detected during my kidney stone scan stage in 2003. This they say has no bearing on my current symptoms.

I really do need definite answers

9

Don’t worry about the spinabifeda occulta at least. It’s very common (I have it too) and has no bearing on neuro or genetic conditions that I know of. Kx

10

Hi, I have spent the last few weeks reading through lots of posts from people like me, in limbo!

I’ll tell you a little about myself, I’m 45, single mum. Diagnosed with Lupus in 2005 then fibromyalgia in 2007. In February of 2015 started to get pins and needles and numbness in my hands, also lack of coordination. Was sent for MRI scan of head and neck. Waited until January of 2016 for appointment with neurologist who showed me my scans and the white lesions in my brain and a scar on the spinal cord that runs through my neck. I was then told that I had MS but he would do further tests. I had my evoced potential test in March and my LP on 14th April. I have chased my results as whilst I’m waiting my symptoms are getting worse. I have phoned the neurologists secretary and was told that the LP results take 6 weeks at least as they have to be sent to Birmingham. I have t even got a follow up appointment! Should I go to my GP every time I get a new syptom? I have had various MS symptoms a long time and have written them off as my Lupus or fibro…I am used to feeling poorly but now I feel like a jumper that is unraveling and don’t know what to do next. Should things take this long?