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MS Nurse

Hi,

i have my MS nurse tomorrow for the first time. Since my diagnosis which was given over the phone I haven’t seen anyone so I have a lot of questions to ask.

one question I don’t want her to think I’m crazy but the only reason I’m diagnosed is due to Optic Neuritis.

since they told me 1.5weeks ago and I’m on steroids this last week I seem to have all the bloody symptoms like numb face, pins & needles in arms & legs which has now turned into an electric shock type pain in my legs.

does this happen when you are on steroids? Speeding up the symptoms I will inevitably get or is it my mind playing tricks on me? I have tried everything to ignore these but they are not going away. Last day of steroids today could they just be horrific side effects from them which are similar to MS symptoms?

Can anyone help??

Rach xx

I don’t know. One possible reason is that, when MS first rears its ugly head, it is pretty common for it to pop up in more than one area in more than one way. In my own case, for instance, I got a weak hand, a numb lower half (these came first), and then some dead fingers and double vision (the things that got me a formal dx) all in a few months. Before that I had barely heard of MS, let alone suffered any symptoms of it. So it is not unusual for a various specific but different things to be going on, whether those show as actual symptoms or just appear on the scans as silent evidence of the disease process at work.

All those things you talk about sound more like MS to me than like the more generalised feeling of having an upset system that often comes from high dose steroids. But your nurse will have a much better-informed view on all that. I hope that you have a good and productive consultation with him/her.

Alison

Hi Racheal,

Let’s go back a bit; you have not seen a Neurologist; you have not had Evoked Potentials; you have not had a Spinal Tap and most important you have not had an MRI?

Who told you over the phone “You have MS” based on Optic Neuritis; which you can see by optic neuritis - multiple sclerosis encyclopaedia can be caused by many things.

Do you get electric shocks in your legs when you bend your neck; put your chin on your chest. If so it is L’Hermittes; https://www.mstrust.org.uk/a-z/lhermittes-sign

George

Hi George

If you see Rachael’s other post, she has seen a neurologist and had an MRI. So being told over the phone was crap, but not just completely out of the blue.

(Just to fill you in.)

Sue

Hi Rachael

What you’re describing sounds more like MS relapse symptoms than reaction to the steroids.

Your best bet is of course to sit down with an MS nurse. So it’s a good thing that it’s tomorrow.

What I’d expect you to be discussing is all of these symptoms you’ve got just now, your reaction to the steroids, and of course, the biggest thing will be disease modifying drugs (DMDs). Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid This has all the various DMDs that are available at the present time. You may not be able to just pick one of these, it will depend on lots of issues, one is what your neurologist thinks you qualify for. Some are second line drugs, this means that you have to have been on one DMD and have ‘failed’ on it, i.e. continued to relapse. Others are only available if the neuro thinks your MS is highly active. Still others may just not be available in your area because there’s not been a prescribing centre set up.

So, have a look at the main first line drugs, these are all the beta interferons and Copaxone. They are older drugs, but in some ways might suit you as their side effects are manageable by many people. They offer about a 30-35% relapse reduction on average. Tecfidera is the other one that should be available. Many people see it as a better option, it’s an oral rather than injectable therapy, it offers an average 50% relapse reduction and most people can manage the side effects. The other reason why Tecfidera is a good first option is that it’s been shown to be most effective when it’s the first DMD a person has tried.

So, when you see your MS nurse tomorrow, you should probably have a note of questions you want to ask. If there are any symptoms that you want to think about drugs to help with then have an idea about that. Have a good look at the DMDs and have some idea about what if any you want to try (some people prefer to wait to see what happens). Don’t forget, it’s your decision. The MS nudes and neurologist will have their preferences, but within local criteria, it’s your decision.

Best of luck

Sue

Hi George sorry I should have been a bit more clear, I had optic neuritis for around 8 weeks before the eye doc at my 2nd apt sent me downstairs to neurology then a few days later I had the MRI which he then rang me 2days after to give me the news.

He said about the LP but having witnessed my some undergo 2 I wasn’t overly keen but once MRI was back he did say it wasn’t needed as MRI showed it very clear lesions with the contrast.

i do however need another MRI of rest of spine as they only did brain and top of spine this time which hopefully will be in the next few weeks/months.

I do have to say though that me Neurologist has been been amazing calling me near enough every day and I did ask for a call on results as I’m so inpatient I new I’d be going insane waiting weeks to see him.

Thanks for the info though & Sue, nice to know I have people to speak to through this pretty shitty time!!

Rach xx

Thanks Alison,

good to hear it may not all be in my head. It’s just such a whirl wind few weeks for me.

im going into this apt positive and with a million & 1 questions I hope she can handle me!!

i neither had any symptoms from what I thought but looking back on it, iv had the heavy legs and pins & needles in hands but just ignored it, amazing how I use to be able to do that but now someone has given me a name on it I can’t bloody ignore it :slightly_frowning_face:

Rach xx