Last reply 3 months ago
Health Professionals

I was wondering and am not asking for personal information. I just feel like am stuck with my health professional. What your MS nurse and MS doctor like? What do they do with you when you have a attack? what happens at your annual appointments? Am not asking for personal information just experiences with their ms team

Thank you for reading my post

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3 months ago

@sarah_graham , when it comes to our medical support, there are some and there are others.

There are Neuros and there are MS Specialists. Neurology is a big subject area and you really need your Neuro to specialise in MS.

MS Nurses only deal with Multiple Sclerosis patients so should be more in touch. But, they have to be supportive, approachable and contactable.

Annual appointments should review the latest MRI Scan, to consider your treatment options going forward and answer any questions you may have.

3 months ago

My personal experience has been pretty good so far. At first I was seeing the neurologist who diagnosed me in the hospital and would see her once a month, but after a bad relapse she felt that it was out of her league and I needed a specialist so she referred me. I see my MS specialist and my MS nurse a couple to few times per year since my MS is very active and was considered aggressive. They always spend a lot of time with me and make sure to answer all of my questions. They spend usually at least 45 mins with me each time. I feel very lucky since I know a lot of people who only see theirs once a year for 10 minutes and they usually need more time. All of the staff at the neurological institute I go to are extremely friendly and if I call with a question or med refill they call back within 24 hrs, usually only takes a couple hours though. I’ve only had the one relapse since I’m newly diagnosed and my neurologist at the time had me go to the hospital where I was admitted and given steroid infusions. I had lost control of my left leg and the steroids weren’t helping so they went on to do plasmapheresis which was great. At the new place I’m not exactly sure how they handle, but they do decide if you need steroids and give infusions if needed.

3 months ago

my current Neuro, stopped practicing for a couple of months. Not a big deal to me but he cancelled all of his appointments for everyone, if you are concerned your current health team isn’t being supportive go to your local MS support centre they will help and give some recommendations to other alternatives if it’s an issues.

My current team is quite lacking I am symptom free at the moment, So not a huge issue for me. But that’s my experience they were very helpful when I did have symptoms. I was scheduled every six months to get an MRI during a flare up and had blood cultures for my bodies reaction to my medication for 2 years. it was hard to go in to see my neuro he was at the time the only one of two within 800kms so he had a lot of patients to deal with.

I feel like the most important thing with your neurologist and MS nurse would be to make sure the questions you have are getting answered.

best of luck


3 months ago

As you have gathered the answer can differ by patient and doctor.

My symptoms occur in a specific organ (my eyes) so most of the time I call my opthamologist who knows how to refer me on.

Otherwise, the MS Clinic has me call the MS clinic nurse, which I have not needed to do. I am virtually certain I don’t see my neurologist in these situations, just clinic staff who would know how to refer me on.

3 months ago

I only see my neuro once a year and the MS nurse once a year. I have only called him one time and that was when I had a relapse. He had me come in immediately, he was very concerned and let me take steroid pills instead of the steroid infusion he wanted to do. I had a bad reaction to steroid shot once so I was more comfortable on a low dose pill. I am always well versed in what my MS is behaving and what is the latest research and thoughts on MS. Potter

3 months ago

@stumbler Thank you

3 months ago

Thank you everyone @stumbler @mlgiber1 @brando @sfrox @potter You have no idea how much you have ease me. thank you so much 🙂 sorry it a bit late the reply

3 months ago

@mlgilber1 Thank you (sorry I miss spelt your name )

3 months ago

In Saudi they insist on 1000 cortizon after any attack
But I always refuse

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