All very fast!

New diagnosis and before diagnosis
1

Hello all,

My husband was diagnosed with MS last Thursday so all very new still. I think this is going to be more of a rant and questions and won’t follow any particular order so sorry in advance!!

It seems to have happened very quickly and reading other posts on here I see people waiting months and months for definitive diagnosis…

About 1 month ago he started complaining of feeling “a bit odd”… dizzy/ off balance but couldn’t really explain it. I put it down to an inner ear infection, he was okay, still going to work, travelling for work and playing football. Within about a week his walking became difficult, he was tripping a lot and generally struggling to walk. We went to a walk in clinic (as could not get a GP appt for about 3 weeks!!!) and after seeing his gait the doctor was not happy and referred him straight to the local A&E medical team (other than this my husband is a fit and healthy 31 year old that has only had one incident of sickness in 5 years from work).

He was admitted that evening and stayed in hospital a couple of days, he was scheduled for a brain and spine MRI and a lumbar puncture.

We had the diagnosis confirmed last week, I had suspected for a few weeks it was going to be MS having peeped at both his MRI referral notes in the hospital, and later some other medical notes whilst he was getting his lumbar puncture. We were told he has a number of lesions on his brain, which they can see are both old and new ones, and then some on his spine. He had previously been diagnosed some years ago with carpal tunnel syndrome in his hand due to numbness, tingling and weak grip, but the neurologist has said that it was likely it was the start of his MS symptoms and not all attributed to carpal tunnel.

However we have been told that due to NICE guidelines he cannot be started on any treatment until he has had two relapses within two years. Is this normal? It looked like on some of the other threads a lot of people have been referred for treatment nearly straight away?

He has been prescribed a three day course of steroids to speed up the end of this relapse and hopefully get his walking back to normal; although he cannot start these yet due to a UTI (a side effect of the MS). Have you guys found success with the steroid treatment? I know everyone is different but how quickly can we expect him to go back to “normal”?

I also noticed on another thread someone said their consultant had recommended some vitamins (vitamin D?) supplements as this supposedly helps, has anyone noticed a difference with this?

So for now, we are just hoping the steroids make him better for now, once he is able to start them, and then it is just a waiting game for the next relapse. We have a check up with his neurologist in 4 months but that seems to be it, no other follow up. He asked if he was allowed to drive and was just told that if he feels okay then he should just go ahead… is that correct or do the DVLA have other opinions?!

Thanks for listening… whoever you are :slight_smile:

LH x

2

Hi LH

I am sorry to hear about your husband, I’m sure it must be a big shock to you and him.

I am no expert on MS and I do not have a diagnosis, however I am an NHS healthcare professional (though in a completely different area).

I’ve not read the NICE guidelines but it would seem to me that if there is evidence from the MRI that the MS has been in-situ for a while, I’d like to think you’d have a good case for pressing for treatment now. They are only ‘guidelines’ at the end of the day and are down to individual cases and interpretation.

In terms of your other questions, hopefully something with more experience will be along soon to help. I believe, if the diagnosis is MS, you do have to notify the DVLA. However, again, I am no authority on this.

Take care

Jane x

3

someone (not something!)

4

Hi LH, I think you could query this. If you husband has a ‘definite MS’ diagnosis then he should be able to start a DMT. If he has a ‘possible MS’ diagnosis also known as CIS he could be able to start an injection only DMT.

Is your husband under the care of an MS specialist consultant neurologist? or general neurologist/ other speciality consultant neurologist. I would recommend he gets to see’s a MS specialist consultant. Not a registrar.

The other thing your husband should be able to request another MRI scan three months or six months after the first scan. If there are new lesions on this scan then that is also classed as active MS.

5

Hi Lenny, Thanks for your response, I’m pretty sure it was a definite MS diagnosis, there wasn’t any talk of it being CIS or possible MS. He was seeing a general hospital neurologist but there was talk of referring him to an MS nurse at “the National” (we’re in London) so maybe we should wait to see if we get a letter for that. There wasn’t any mention of a follow up MRI at this point, he just said he’d see us in 4 months for a check up.

6

Hi June, thanks for your lovely response and help. I guess we’ll maybe follow up with the neurologist about treatment. X

7

Hello Mrs H

The “two relapses in two years” requirement is only a NICE guidance requirement for those DMTs which can only be proscribed for “active” RRMS. At a guess it sounds as though your husband is in a similar situation to me - he meets the diagnostic criteria for MS from his MRI (showing old and new lesions in one scan, in multiple parts of the CNS) - but that the Neuro wants to see whether it will be possible to prescribe a drug with a higher efficacy rating, for which a diagnosis of active RRMS is needed, before looking to prescribe one of the lower efficacy injectable DMTs.

Has your husband’s neuro said anything about how he is going to monitor sub- clinical progression to see if you can get an active diagnosis without waiting for a full blown relapse (my understanding is that a lot of MS activity doesn’t result in clinical relapses - the ones that do are the tip of the iceberg so to speak - but evidence of these hidden “inelegant” ones can still count towards diagnosis)? I have an MRI next month, 3 months after my initial MRI, for just this reason.

K xx

8

Hi LH, Weakness in limbs (arms or legs) or changes to walking indicates to me these are motor symptoms. You could introduce your self and your husband to the MS nurse by finding out their name and emailing or phoning them. This could speed up the process of getting an appointment with the MS nurse. (I did this when I was diagnosed). Then you could discuss a second MRI scan and treatments with the nurse.

xx

9

Hello

Yes it sounds like a definite diagnosis. I imagine if they could differentiate between old and new lesions they used dye with the MRI?

Here are the current ABN Guidelines. http://pn.bmj.com/content/early/2015/06/20/practneurol-2015-001139.full

They indicate treatment for RRMS should be considered from the word go. Some neuro’s are more proactive than others - remember he has the right to be treated anywhere in England.