I was diagnosed in August at a private clinic (as nhs waiting list was too long) but as they couldn’t get hold of my mri scans, I had too wait for an nhs appointment, which I had on the 1st November. I’ve had 4 relapses in 18 months and have spoken to the ms nurse about treatments. I thought the high dose would be more effective as it has 80% chance of not having a relapse. I don’t know the name of it but it’s an injection which I will do at home, once a month.
I spoke to the consultant today and when we talked about the high risks and pml, I completely shut down and I don’t know what to do. Yes, getting pml is very low risk but after reading about it, I don’t know whether I can go on this course of treatment. I’m really scared, I have five kids, the youngest being 5 and I don’t want to leave them. I don’t know what to do. Does anyone have any ideas?
Hi Ana. I should say at the outset that I’m on Avonex and not on what I think you are being offered : Kesimpta? Also I’m definitely no expert. From what I’ve read however PML is triggered by a virus that many of us carry - JCVirus- and drugs like Kesimpta that supress the immune system can result in some reactivation of the Virus and in rare cases this can lead to PML. I was reading something on Tsybari ( another MS drug) where it says you can get a test to see if you have been infected- are carrying the JCVirus. I could be talking rubbish but might be worth looking into and discussing with your consultant? ( in terms of reducing MS relapses, Kesimpta is very good - better than Avonex!)
Hiya, I think it is kesimpta. I felt like the consultant didn’t think my worries were important. Saying the ms was more important being dealt with than the chance of getting pml. I asked whether the low dosage would be better, as there’s no worry of having anything serious and apparently she has never heard of a patient wanting to change to low risk drugs because of how serious having this immunosuppressive drug is. I did see about the test, but whether I’d be allowed to have that, is another matter entirely. I have until the new year to make a decision.
It is no wonder if you are feeling anxious. You have recently received in life-changing diagnosis. Your pre-diagnosis life maybe looks like a marvel of calm, well-ordered stability in comparison to the shifting sands you feel under your feet now. If this rings bells, it is because it is perfectly normal reaction.
Maybe you feel as if about the only thing under your control is whether to take the recommended medication? You cannot choose whether to have MS or not, but you can choose whether to take the meds or not. Is that it? If so, please understand that taking the medication is your way of taking control of your situation, and managing the impact that MS might have on your life and your family’s life.
I do not know what drug you mean, but for what it’s worth. I have been on Tysabri for over a decade and it has changed my life for the better. I know the PML risks, but I also know to my cost what uncontrolled active relapsing remitting MS can do to me. For me, being on the medication I need has made all the difference to my quality of life.
I really appreciate the comments I have received, as I don’t feel so alone.
I understand that I have to take the recommended medication but I am going to ask for the jcv test, more for my peace of mind, than anything.
I just want to wake up from this nightmare and everything is back to normal, but unfortunately I can’t.
I’ve been seeing this person who is like a chiropractor and he seems to make me feel better after seeing him, but he thinks that taking the medication is not necessary. He talked me into having this blood test which detects food intolerances, and I have to admit that since I avoided certain things, ie wheat, dairy, gluten, maize, yeast and a few others I don’t feel so tired and bloated. But he thinks that by changing my diet I can reverse the ms, as he believes that the food I was eating was leaking out of my stomach and into my blood. My doctor doesn’t believe that, but he sounds hopeful. Am I being taken for a ride?
Hi Ana, I understand your anxieties. I remember when I was offered Avonex I looked at the list of side effects and risks and nearly ran : heart failure and liver failure ( and I kid you not, even death is mentioned in the patient information leaflet! !). However , particularly in the early years you do get very closely monitored and in the end it was an easy decision especially after seeing what MS did to my aunt. There were no treatments available to her in the days when she was diagnosed and she just got increasingly disabled, totally reliant on her husband until he couldn’t cope and from mid-late 60s she was more or less bed bound in a nursing home. I most definitely did not want to end up like my poor unfortunate Aunt! Sorry if this seems like an exaggeration but basically MS gave her a pretty poor life.
As it is, I was diagnosed 17 years ago after an episode of Optic Neuritis and started taking Avonex soon after. I’m not doing too bad but have trouble walking for more than 15-20 mins and experience seemingly random episodes of MS Fatigue. I also have problems dealing with heat/ hot weather.
What would I do in your situation? Probably go for the Kesimpta and in fact I’m due to see my MS Nurse and consultant in January and will ask about changing to Kesimpta - it is more effective than Avonex (my guess is that they will say something like ‘ well you seem to be doing OK on Avonex’ but I will ask anyway).
Hope this helps.
Hi Ana, I’ve just seen your reply to Alison. My very clear view is most definitely do not rely on changing your diet as a cure for MS!
And most definitely take up such advice from a Chiropractor- they deal with musco-skeletal problems of the back/ spine. Does he have any qualifications- experience in immunology/ autoimmune conditions.
You could try changing your diet but - PLUS take one of the Disease Modifying Drugs/ Treatments.
So far as I know there is no evidence, no examples anywhere that a simple elimination of some foods can be a cure and , to be honest, I think it is totally irresponsible for this guy to make such suggestions. Does he have any evidence, any previous cases where by simple elimination he has cured anyone of MS?
I have changed my diet to something like a Mediterranean diet - with low intake of saturated fats and high intake of unsaturated fats, and also try to follow a generally healthy life but there is absolutely no way in which I would stop using Avonex.
Hiya Hank, as far as I know, he hasn’t cured anyone anyone of ms. I think he is just against medication. He even suggested that I do a six month carnivore diet. When I explained that I couldn’t possibly eat just meat for 6 months, his response was “then maybe you should have the injections” acting snotty
I am a great believer in Dr Food and regard good nutrition as a key part of my strategy for staying as well as I can be. But (you sensed the ‘but’, didn’t you? 
) for me nutrition therapy is definitely as well as, rather than instead of, an effective DMD.
The politest then I can think of to say on the subject of your chiropractor-type person is to suggest you remember whose central nervous system is on the line here. It’s not his.
Hiya, spoke to the ms nurse this evening and I’m completely overwhelmed by the phone call. The jcv test wouldn’t be suitable because even if I didn’t have it, there’s no saying that I wouldn’t pick it up anytime. And it has to be sent to Denmark so having a repeated test is out of the question due to the costs.
Also my ms is high progressive and the mri scans don’t look good. So the high dose treatments is the only course, as I’ve been told that if I have a serious relapse then it might put me in a wheelchair.
Even putting it in a message is hard because this is real, my life is never gonna be the same again and I don’t think it really sank in before. I thought I had accepted it but I was just in denial
This is tough stuff you’re going through, and your MS nurse is making sure you’re under no illusions. That’s tough to hear for you, I know. My MS was aggressive from the start too, so I really feel for you.
There isn’t any way to feel OK just now. But if you concentrate on the big things - protecting yourself against MS damage in the best way you can and as soon as you can - that will be a big step forward from where you are now. I started to feel better and calmer once I started treatment. I hope that you find the same.
Anyone using zeposia?
Hi Ana, sorry only just seen your message. I was diagnosed earlier in the year and started On Kesimpta in June. I was worried about the same thing but really wanted to start treatment so just didn’t think about it. Touch wood, I haven’t had any side effects from Kesimpta and my fatigue is so much better. The injections are easy and this is from someone who struggles with needles. You don’t see it just like a pen. I understand you being scared and it is your decision but there are side affects with all medication. I wish you well with whatever decision you make.