My husband was diagnosed with Relapsing and remitting MS in December. He was placed on Rebif in March and this seems to exagerated his symptoms to the point where it was taking over our lives so he stopped taking it 10 days ago. He has informed his rebif nurse and she agrees that it was making him so ill its not worth conitnuing for the moment. However for 3 days he has been worse than I have ever seen him. He has uncontrollabe tremors, he is freezinf, his hands and feet are white and then he is too hot to touch. Last night and this morning he has vomited with no warning to even make it to the bathroom. I have been trying to call his MS nurse for 4 days now because last week was my daughters first day and school and he couldn’t even move to take her. We saw the consultant 6 weeks ago and he has requested another MRI scan. His symptoms are there daily without much of a break. I am so frightened that he has primary prgressive now as the lesions on is initial MRI were very large. Is it normal for another MRI scan to be done so quickly? Are his current symptoms normal for MS. I am at my wits end now at how to help him and watching him is destroying me, please help xx
Hi I just posted a comment but it seems to have got lost… Basically I was saying that my partner had a follow up MRI 6 weeks after first one, so must be reasonably standard. Still no dx but looks like ms is only option left as tests have been run for everything else under the sun…and it was on cards from earliest days. I’M not surprised that you are at your wits end …it must be so frustrating not being able to get hold of ms nurse, particularly given the new symptoms. Perhaps you should get your husband to the GP or to A & E, if only for reassurance. I only know my partner’s symptons and they are different - though their hands do go cold and then burn. Could it be withdrawal symptoms? Has he got a fever? If so it may not be related to ms. We were often panic stricken and fearful during and after the first attack and found ourselves back with the ms nurse a few times and in A & E a couple of times. I felt completely helpless and found it really hard to gauge my responses - was I overreacting, was I ignoring something significant that needed treatment? I know how you feel and it’s horrible! I hope things improve soon. Let us know how get on. Take care. S Good luck. Let us know how you get on.
Hi,
As Rebif doesn’t treat symptoms, it seems probable the present exacerbation is a coincidence, and not a direct result of Rebif withdrawal.
Nobody can go from RRMS to primary progressive - the two are mutually exclusive. So unless you’re suggesting the initial diagnosis of RRMS was wrong, Hubby couldn’t be primary progressive “now”.
RRMS can, and in most cases eventually does, change to secondary progressive, but the timescale for that is typically years (about ten). It’s very unlikely someone only diagnosed with RRMS last December would already have “turned progressive” so soon, unless there’s a possibility he already had RRMS for years longer than the diagnosis would suggest.
I think a likely explanation is that your husband is in fact experiencing a relapse. Alternatively, he might have caught a bug (e.g. stomach bug) that actually has nothing to do with the MS, but any infection tends to make MS symptoms worse. Infections that cause fever are particularly prone to this, as MS symptoms are often linked to body temperature, with any rise causing a flare-up. So it would be interesting to know if he’s running a temperature. If he is, it may well be an infection, that’s simply aggravating the underlying MS.
If you continue to have no luck with the MS nurse, I would suggest the GP.
Without knowing more about the background, I don’t know why another MRI has been requested so soon. Sometimes it’s to assess suitability for different kinds of treatment. It might also be to assess whether an existing treatment is working. As your husband was still on Rebif at the time of the appointment, the MRI request might have been to examine how well it was working. It’s hard to say, if the neuro didn’t explain his reasoning - which he should have done.
Did you get a copy of the letter from the neuro, to your husband’s GP, summarising the matters covered at the appointment, and any decisions taken? If you did, but didn’t understand it, GP should be able to translate for you. Alternatively, if you didn’t get a copy (you should, but still not all neuros routinely do it), your GP should certainly have a record of it, and why the decision was made to refer for a second MRI.
Hope this helps,
Tina
Thanks everyone, the MS nurse came and it was a relapse booked to see the professor soon xxx