Forum

Should I chase the MS nurse?

Hello all,

This is my first post, I’ve been reading on the forums for a few months now and am grateful for the comfort that it has given me to know that there are others out there going through and thinking similar things as me.

I had my first attack last June last year whilst on a business trip, I lost feeling from the neck down. When I was admitted to hospital they did an MRI on the brain and spine and found 8 lesions on the brain and 2 on the spine. After a course of IV steroids I was released with a diagnosis of CIS.

I had another MRI 4 months later which showed no changes, and my invoked potentials test didn’t raise any red flags.

Things were starting to get back to normal, with only minor tingling / numbness in my fingertips, and then around Easter I started to get the tingling and numbness back, in addition I had (what I thought) was bad fatigue. Just walking the kids to school meant that I needed a 2 hour nap to recover, and occasionally got the “MS hug” sensation. I spoke with the MS nurses who referred to it as a “sensory episode” and have in turn spoken to my Neurologist. An appointment was made for me to go in and see the Neurologist in June (10 weeks later), and I was left like that.

Things started to get better, the tingling was going back to normal levels, and the “ms hug” had stopped occurring. Then after the May bank holiday I started to get symptoms again, the tingling, the hug, and this time the fatigue was a lot worse. I couldn’t think straight, I was getting vertigo when I was out and about, and sleeping most of the day.

I spoke with the MS nurses again last week who asked me to get a urine test to check if I had a bladder infection, as apparently that can make symptoms worse (I’ve had it checked and I don’t have an infection). They were also going to speak with my Neurologist yesterday.

I don’t know what to do, I am finding this all kind of overwhelming at the moment, and just want to know what’s going on. Even if it it turns out to be another episode and my CIS becomes MS, at least I will know, and stop feeling in limbo. But do I chase the Nurses and see what the Neurologist said, or assume they would contact me if there was any update? I don’t want to bother the Nurses unduly but this uncertainty is unbearable.

Sorry, this message went on longer than I was planning on, I don’t usually unload like this, but it will be good to talk to others who can appreciate my situation.

Thanks

Kedge

Hi Kedge

Yes, bother the MS nurses. It’s their job. In the meantime, you are worrying yourself silly and there’s no need to sit there getting more and more scared about whether it is or isn’t going to be MS. And I do understand that either would be better than not knowing.

When a nurse, doctor, neurologist calls something you are literally suffering with a ‘sensory episode’ and seems to dismiss it as nothing much, it drives you crazy. (At least it would me!) A sensory episode / relapse / whatever, is still unpleasant and frightening. I just want to moan and swear about them, and it’s not even me!

The other thing is that supposing it is MS, at least you can then get a disease modifying drug (DMD) which will minimise the risk of future relapses.

Let us know what happens when you get to speak to the nurse. Maybe your appointment could be brought forward a bit? 10 weeks seems too long from your initial phone conversation.

Sue

Thanks Sue,

Called the nurses and my Nurse is on holiday until early next week. Am now waiting on a call back from another Nurse.

Kedge

Thanks, heard back from the nurses. They can’t do anything to bring the appointment in, as it’s only 4 weeks away now. But have put a request in for me to get an MRI, they hope to get a slot before the Neurologist appointment, so he has a chance to look at it before seeing me.

Fingers crossed.

Let us know. Will keep all fingers and toes crossed (well I would if I could!) for the MRI to happen very soon. You’d be massively p’d off if you have the MRI the week before the neurologists appointment and it’s not ‘been reported on yet’!!!

So assuming you have the MRI before the neurology appointment, phone the neurologists secretary a few days before the appointment to make sure the MRI results have been attached to your file!!

Sue (sorry, I have that kind of brain; too many things can go wrong so I try to cover all the bases!)

Got the MRI appointment letter through yesterday, it’s for the same day as the neuro appointment, in fact 2 hours before the neuro appointment. Not sure if he’ll have a chance to review my mri before the appointment. The first time (whilst I was admitted in hospital) the neuro reviewed the MRI within about 4 hours so hopefully they will be that quick again this time. Fingers crossed.

Kedge

Why not try phoning the MRI admin office and asking if it could be brought forward a few days? I know this means going to the hospital twice, but better than running the risk that the neurologist won’t have had a chance to look at the scan?

Sue

Thanks Grandma and Sue, I heard back from the MS nurses, but they advised they can’t bring the appointment forwards, it was an urgent appointment they got me, so were surprised (and pleased) that the MRI came in before the actual Neuro appointment, albeit 2 hours before the appointment. The nurse advised the MRI was to add evidence to my diagnosis rather than to be a critical part of it, so even if the Neuro hadn’t had a chance to review the MRI before my meeting him then there was still plenty to cover so it’s not the end of the world apparently. On a side note, I chased my LP results (the LP was taken in June 2017) as no-one had any record of the results. They finally came through yesterday, I guess those results (Red cells, White Cells, CSF protein and glucose within normal limits, with positive oligoclonal bands in CSF alone) in addition to my previous MRI showing multiple brain and spinal lesions should give the Neuro and me enough to talk about. I’ve done some reading up on these forums and other MS sites so am fairly sure I know what these results mean. Trying to stay positive, only have to wait and stew on it for 3 weeks :slight_smile: Kedge

Had the MRI yesterday at 14:00 and by 16:00 the Neurologist had seen the results. No new indications of lesions but with my LP results and the description of the “sensory episode” at Easter he has confirmed a diagnosis of RRMS.

I don’t know how I feel about it all. I’m glad I’m out of the CIS limbo and that the Neurologist didn’t fob me off, I now have a definitive diagnosis yay! The downside is I have a definitive diagnosis of MS :(. Glad I have an answer, it’s the answer I expected, but not the answer anyone wants.

I’m busy doing some research on the DMT’s avaialble to me and getting my head around and trying to accept the diagnosis. Off to America on business tomorrow which will help distract me for a week or so.

Kedge

Well on the one hand Kedge, I’m glad you’re out of Limbo. And on the other, MS absolutely sucks. So commiserations for the diagnosis.

While you are flying, here’s some reading for you with regard to DMDs: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

Hopefully you’ll get a good drug to ward off further relapses soon.

All the best.

Sue

1 Like