Hi I don’t know if anyone can help me any in put would be fabulous.
I was diagnosed with Secondary Progressive MS last December 2020 and in February of this year 2021 I had a meeting with my MS nurse, I was offered interferon b however I opted for sipimod I have patiently waited to start this DMT. I was told by my MS nurse 3 weeks ago that my case was being taken to the MSMDT she rang me after the meeting to tell me that they advised I was not to be started on sipimod and that I had to go for another MRI scan which I had on Tuesday as they think I may have primary Progressive MS.
I just need some help as I get married next May will I be on my DMTs by then?
I d be soooo grateful for any advice x
Hello Caz
Trouble is, Siponimod is only licensed for SPMS. So if yours is PP, you wouldn’t be eligible.
Gutting I’m sure. You wait and wait only to find the medics ‘may have’ changed their minds about your specific variety of MS.
So right now all you can do is have the MRI and wait again for their decision.
It’s possible that you could qualify for Ocrevus. Have a look at Ocrevus (ocrelizumab) | MS Trust The only real problem with it is that it works on your immune system in such a way to make you more vulnerable to viruses. So you’d have to be even more Covid aware than the rest of the population.
But, it’s a good drug. So yes, there’s every possibility that you’ll be well into the drug before your wedding.
Try not to be too disheartened by this news.
Sue
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Hi I am on siponimod and I have ppms I’ve been on it
for about 5 months. After I had a mri they saw I had new leasons and I also had blood tests they said I qualify to start Mayzent (another name for siponimod)
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I’m right with you Caz. Some uncanny similarities.
Dec’20 my Neurosurgeon said, following a pre-op MRI, my symptoms weren’t because of spinal stenosis, they were because of MS. I’d been misdiagnosed for 9 years. MS was confirmed by Neurologist in Feb’21 but their treatment plan was “Wait and See”. In retrospect, I’ve had Progressive MS for nearly 6 years but like you, they can’t decide if it’s SP or PP. I had an episode dating back 18 years and others 12 years and 9 years but without any tests, don’t know if it was CIS or something unrelated.
Meanwhile I continued to get worse and on no meds. I kicked off a bit and challenged their diagnosis and (lack of) treatment plan. Effectively said that if some of the suggestions I made turn out to be true but they reject it, they would be guilty of negligence. Heavy stuff! They convened a case conference within a week, I’ve had another MRI and a LP next week. Ocrelizumab or Siponimod should follow but in my opinion, their weak, procrastinating stance has cost me nearly a year - a year in which my health has deteriorated significantly.
So you’re not alone in the PP v SP dilemma. They can’t prescribe the wrong drug as it could make things worse, but they CAN pull their fingers out and get a correct diagnosis much more quickly. Some people can live with MS for 30 or 40 years (generally RRMS) and can respond to DMT’s. With no diagnosis (not MS Doc’s fault) I’ve gone from EDSS 0 to EDSS 6 in 5 years - I can’t hang about with a “Wait & See” approach and I imagine you can’t either.
Was your latest MRI “with contrast”, where they inject you with gadolinium to enhance the images? Also, in view of the indecision, I would advise you to demand a lumbar puncture (LP). Whilst LP has been largely surpassed by MRI for diagnosis, the problem many Progressive cases have is that active inflammation may not be detected even though lesions are present in brain and/or spinal cord. The LP draws off cerebrospinal fluid which can be analysed for composition and for evidence of antibodies.
For more information, look at:
lumbar puncture
and for a more medically detailed comparison of the two types, look at:
PP v SP MS
Graeme
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Sounds like you were administered drugs before they’d correctly diagnosed you, which is the other extreme from me, where NO drugs have been prescribed (as yet) because of uncertainty. I guess neither is ideal…
The only other option would be Stem Cell Transplantation but the qualifying criteria are even more stringent, it’s very costly and risky as it involves killing off your immune system and replacing it with a newly grown immune system devoid of the part that attacks your nerve cells & myelin sheaths. In UK it tends to only be approved for aggressive MS strains and where other treatments have failed.
See:
Stem Cells and MS
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Thank you to everyone who has left a comment you are all wonderful and it means so much to me.
Keep staying strong and positive. 
Yes my MRI was with contrast hun
I had a lumber puncture last December and my MRI was with contrast its just a case of wait and see but I just adapt the way I live now 
Thank you Sue I keep trying to look ahead and staying positive. I have my fingers crossed that I ll be on treatment by the time of our wedding in May 2022 I have had my booster covid jab a week ago and I always have been procusious since I was diagnosed last year I have read about the Ocrevus treatment too since my MS nurse said when she attended the MSMDT they had questioned my diagnosis saying it could be Primary Progressive.
Thank you so much for reading my post Sue I m so grateful for your advice and support it means so much to me.
Caz x 
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I think that you should stay positive Caz. Final round of tests, let the MDT have their round table discussion and hopefully within say 3 months (Covid allowing!!) you should have had round one (2 doses) of Ocrevus well before the wedding.
Sue
Hi there lovelies,
Small update my MS nurse emailed me on Friday saying she had checked to see if there was a report on my MRI but there wasn’t and how she is goin to check again tomorrow. So fingers crossed 
Love and hope
Caz x
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