Last reply 1 year ago
MS Nurse

Hello everyone!

I’m due to have my first appointment with the MS nurse in September and I was wondering if anyone could give me any hints on what to expect from the initial appointment?

My MS doc told me he wants me to start on dmds straight away and just to go and read about all of them (despite the fact I can practically quote the MS society page already ha). Will the nurse give me a choice of the drugs or maybe two options to choose from? Is it the nurse that then gives me these drugs? How long do the appointments usually last (or is it more of a how long is a piece of string type deal?)

A bit of background for me, I’m 30yr old female who is (was?) very active with sports. I trained BJJ, Muay Thai and ran 5 miles every other day and more on the weekends. I regularly wander around taking photographs of dilapidated buildings too.

I had a hot flush down my leg in November last year that lasted two weeks, then I started to get tingles from my lower back down my legs which were irritating but not too bad. I went caving in Paris for four days and it got significantly worse. Doctor said there was nothing wrong and to just rest and see how I felt.
Over Christmas 2016, my feet and shins started to go numb and I woke up in January numb from my ribs down! I could still walk but I wasn’t remotely confident due to the sensation. Que emergency MRI, oral steroids and a lumbar puncture later and I’m told it’s MS and I have extremely low folate. I then had a further relapse in June which just resulted in my right knee going numb for 6 weeks and so here we are, the new and not so improved RRMS version of me who does yoga every day and is greatly attempting to run more than two miles in any one go!

Sorry for blathering on!

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vixen
1 year ago

Hi there, if you type ‘MS Nurse’ into the search box, you will get lots of posts from people asking the same question. Having a nurse is great; my fist appointment seemed to be equal airspace for questions both ways. The nurses really like to buildapictureof you. Not all places have this service in their region so we are very lucky. Good luck! Oh, and take it easy on the exercise front! 🙂


stumbler
1 year ago

@avox, have a view on which DMD you would prefer and why. You need to be an active participant in this conversation. And be prepared to argue your point of view.

I’d echo what @vixen said about not over-doing the exercise. A rise in your body temperature can make MS symptoms to temporarily exacerbate (Uhthoff’s Phenomenon – https://www.mstrust.org.uk/a-z/uhthoffs-phenomenon)!


tracyd
1 year ago

@avox

First and best bit of advice – make friends with them, they’ll give you options, but if you know what you want ask for it and be ready to explain why it will work best for you and your life.

There are fantastic medications that if taken early can slow or stop the MS in its tracks, even give hope of repairing some of the damage (not guaranteed)

Just under 3 years ago Ines in your situation and ldecided to fight back. The last 2 1/2 years of my life has been published in real time since I had my treatment with Lemtrada. I’m 2 1/2 years no evidence disease activity (NEDA) and the numbness throughout my body has all gone and life is normal again. I do manage my energy well (mostly – gardening and chopping trees yesterday wasn’t my finest plan)

The link to my blog and the eBook version of Year 1 are on my profile.

You have a friend request, if you want someone to talk to I’m happy to share contact details on PM xxx


avox
1 year ago

Thanks for the replies everyone!

I’m not going crazy with the exercise, I don’t do martial arts anymore (though completing a Muay Thai class is one of my goals!). I stick to daily yoga and the odd run now and again as the heat definitely plays havoc with me! I run like a new born lamb or at least that’s what it feels like 🙂

Tracy, I’m not sure I “qualify” for Lemtrada but if I did, the only thing that puts me off is that I’m incredibly squeamish when it comes to needles in veins!! I don’t know if I’d physically be able to handle the infusions without passing out constantly / crying hysterically or vomiting on myself!

I’ve been looking quite seriously at Avonex or Plegridy (needle not in vein is ok – I have many tattoos!) But I don’t really have any reasoning for choosing them other than the side effects don’t seem overtly horrendous.

@avox It seems like you are a very determined person and likely to do what you can to keep the diease at bay. I would consider lifestyle modification as well as a drug (take a look at something like overcomingms.org) You already have the exercise part going so maybe some of the other steps will help as well. We follow it very regularly.

My wife is taking Tecfidera. I would recommend you consider Gilyena or Tecfidera as good starting points. Most of the side effects are monitored for and can be avoided. Much that wasnt known about them is know as time as passed and they now know what to look for before some of the worst side effects. If you feel like you need something more effective and willing to take some risk there are more effective treatments but it might be that these drugs are enough to keep things at bay.

You should consider getting yourself testing for JCV. Because if you are JCV negative, Tysabri is extremely effective and there are very low risk of side effects. If you are JCV positive then you have a risk of PML which warrants a lot of caution.

Those are my personal opinions of course. Numbness usually occurs because of lesions in the spine which means that you have to take that a bit more seriously for mobility issues which is why would recommend something at least stronger the Coxpane. You also might have had two relapses about 6 months apart so its worth getting started on something soon. Did you have more details on what your MRI showed?


avox
1 year ago

@californiadreamin thanks for your reply!

I cut out Gluten and Dairy in February (my friend also has MS and swears by it) which I think is a very small part of the oms diet. I must say, as much as I miss cheese and cakes, the few times I’ve accidentally eaten something that contains gluten or dairy my hands tingle within minutes so I know at least for myself, there’s something there!

I’m assuming they would check for JCV if I were to start one of the PML risk drugs??

The MS doc said that my disease is of the spinal type with several post contrast enhanced lesions in the cervical spinal cord. I also have one tiny little lesion in my brain but apparently that wasn’t active at the time of my MRI. He did say that the inflammation in my spine was quite severe and that he would be concerned that if I had a “bad” relapse it could have a permanent effect on my legs.

Of the oral medications Tecfidera is definitely the one I would go for, I’m sure I read more negative things about Gilenya than i did Tecfidera but I suppose that really I need to push that aside and experience these for myself and hope for the best.

I’m just really worried about, well, feeling like crap when I don’t particularly feel very ill at the moment.

@avox Well I think most places wont recommend Tysabri as an initial DMT. However the rocky mountain MS center which is probably the leading 2-3 centers in the US would recommend starting with that if you were JCV – . My wife is at Stanford and I didnt know that when we started but she is JCV negative so probably would have gone for that over Tecfidera. However, we are 10 months in without many issues and no MRI progression seen. So at this point we are trying to determine if we should switch to Ocrevus or one of the newer drugs that are in Phase 2 right now.

I would recommend watching for an overview:

I think its good that Dr’s partner with patients on what DMT’s to take, but at the end of the day doing all the research yourself and not being given the proper tools for making that decision doesnt seem like its leveraging the dr’s skills. However, the reality is that most doctors know a lot about biology etc, but they are less aware of statistical analysis of the right way to manage risk and reward.

The above video I think will give you more info then you wouldnt have gotten from a dr in a short session anyway. There are a number of others I can send you if you are looking into it.

The good thing with Tecfidera is my wife doesnt notice it at all anymore. There were a few really, really hard weeks, but that was it.


richj
1 year ago

@avox, I have read through the comments and as usual I am really impressed by the knowledge and humanity shown by people on this site.
Tracy is 100% right: get on the right side of the MS nurse, and all medics if you can. I have seen my aged mother wind up doctors and seen others try to create an empathetic interaction, and the latter is the way to go.

I can only comment on Avonex, as that is what I am on. At the time, it was a toss up between that and Plegridy, based solely on Plegridy being a fortnightly jab and Avonex a weekly one. I was advised by the MS Consultant that Plegridy is quite new and I should go for Avonex. Others may have a different experience, but that was mine. On that advice I went for Avonex. it’s once a week into your thigh. It’s not great, but I can think of a lot worse things, and as your body adjusts to it, the symptoms (that not everyone gets) improve. For me, they have been feeling a bit under the weather for 24 hours. Also, you don’t see the needle when you inject, if that’s a worry.
The comments on the exercise are valid too. It’s a balance between exercising and not overdoing it. They may offer you an appointment with a fatigue specialist, as they did for me. That might be useful and you should ask.
I wish you the best of luck
RichJ

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