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Seeing ms nurse for the first time

Hi everyone, I’m new here! I was diagnosed on Tuesday with rrms and am seeing my ms nurse on Friday! It is all moving very quick and I am a bit nervous about Friday… What can I expect?

Don’t worry mine was that quick. My ms nurse is lovely was here for about 3 hours answered all the questions we had written down and gave loads of information with regard to different groups and organisations that can help. I’ve seen the the neuro twice and her once all very useful meetings because it took me a while to get my head round the news. Just take as much time as you need to get you’re head round it and try not to feel rushed into anything that you are unsure of take care.

How did it go with the MS nurse?. I got diagnosed today - have sort of knew for a while. Apparently I have had multiple relaspes with quite a bit of scarring to the brain. Next step is which medication? Neuro said the choices today - but was way too much info for me to take in, in a single session

I was diagnosed on the 12th May and am yet to have an appointment with a MS nurse. Hope your appointment went well! x

Hi i am new to all this so please bear with me . I recently had a fall in work did not know much about it until i came round with one of my work colleagues stood over me trying to wake me but eventually i came around . i was then in hospital for a week whilst they done tests ie MRI scans and have since found i have an abnormality on the left hand side of my brain and have told me that its 99.9 percent MS , I have an Appointment to see a Neurologist on the 14 th of July but im very nervous . Prior to my fall i too was Experiencing numb feet and toes left side weakness terrible headaches and extreme tiredness .I too do not know what to expect from the neurology appointment so if anyone can help i would very much appreciate it .Thanks

Sorry to hear about the problems you’ve been having Kimburly.

Write down all your symptoms and any questions you have. Also write down the answers and any info they can give you.

If there is an MS nurse in your area they are usually a great source of support and can refer you to physios to try and make your life a bit easier.

Hope all goes well in July.

Jen x

p.s. Great that you’ve found this site as lots of people to answer questions but it’s sometimes better to start a new thread so that all the replies refer to your question.

Hello everyone,

I’m waiting for another consultation with neurological consultant as I need a 2nd opinion apparently.My results came back from the lumbar puncture and MRI gave mixed signals. My biggest problem is January I was admitted to hospital where my legs had extreme pins and needles and I couldn,t walk very far. Now I can walk further but no where near how as active as I use to be and have horrible head sensations. I read one of our ladies had the same thing and I can,t do any exercise which means leaning forward or putting my head down as it feels awful.When we were kids and doing head stands the sensation is exactly the same as that but more like doing a head stand for an hour.It has stopped me doing lots of things then I get a few days break then it comes back.

I am seeing my Dr. tommorrow to see if there is anything that can be done to help with the head problem though I am not holding my breath.I am also on blood pressure tablets so just don,t know if it is all connected or if its is the result of symptoms of the white spots found on my brain.

Any thoughts or similar experiences would be really appreciated.

Many Thanks and Love sent to you all.

Wendy x

hi , i am new to this forum and have recently been diagnosed with active RRMS …my head al lover the place , feel very odd , i am due to see ms nurse Tuesday…but have no idea what this is going to involve ? also been told my neurologist to look at DMT and try to see which one i think would be suitable for me ? how am i supposed to know ?? i would appreciate any advice anybody can give me and any experiences with the different medications…side effects really scare me …thanks u x

Hi Donnam Welcome. Not sure if anyone referred you to the MS Decisions site. I found it useful in making a decision and also with help from this forum. https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid Please have a read, compare the DMTs and ask us any questions you have.

thank you , i have looked through but its so confussing , the side effects really scare me…i wish i could get peoples views on meds they already take x

One tip I use is to turn on your record app on your phone just before you go in. It helps to listen back at a later date. Also make a list of questions. Try to take charge of the agenda so you make sure you ask everything you wanted to.

Trev

i had my first appointment with a ms nurse on monday and i didnt have any questions to ask becuase i feel no different than i did before i was diagnosed last month. she just kept asking if i was sure that i didnt have questions which made me feel a bit silly as if i should have had questions. i got blood tests took to check blood counts before i am started on medication

Hi Folks. I was diagnosed 10 days ago and I am still waiting for an appointment with the MS nurse. I am struggling a little to get my head around all of this as well. Just been told to go onto this site, not sure what will happen next, I’m nervous. How long do I wait before rattling doors as I’ve just read about D.M.T and they say you need to get onto it as soon as possible. What is people’s experience of it please?

hi R.A.B.

your is the most recent comment so i’m going to answer yours.

i had read up on the DMTs before diagnosis because i was certain it was ms.

the flu-like symptoms of some injections put me right off.

at the time there were no oral therapies so that left me with copaxone.

i told my ms nurse about the way i’d made the decision and she was happy for me to go on daily injections of copaxone.

for the first 2 years i had no adverse reactions but then i found that injecting my tum gave me cramps.

i muddled on through but made a note to ask my ms nurse who said it was ok to miss one injections site as long as i was still doing daily injections.

last year my ms nurse saw the mess on my arms caused my lipotrophy and offered me tecfidera (2 tablets a day).

tecfidera has been brilliant although i had some gastro problems at first.

i asked about alemtuzumab (lemtrada) but it hadn’t been passed by NICE at the time.

ask if you can try another if your choice doesn’t agree with you.

take your time, research the DMTs, make a shortlist and ask as many questions as you need.

good luck

carole x

Hi

Ten days is no time at all to get your head round the beast that is MS. You may find that this forum and the Everyday Living forum have plenty of people able to help you to make sense if of it.

In terms of disease modifying drugs (DMDs), have a look at the MS Trusts decision aid: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

The MS Trust have a whole load of useful publications all available to read online, or you can get hard copies sent to you. Their home page is: https://www.mstrust.org.uk/

Just remember that no one on these boards can give you any definitive advice, we can only share our own experience.

Best of luck.

Sue

I have just been diagnosed after years of tests and different consultants.Ive been told I’m being referred to an Ms nurse.I havn’t been told what type of MS I have ,what treatment if any I will get or if I will get any worse. I have 2 young children and to be honest feel quite scared. Atm I have a lot of weakness in my right side .I have constant trouble with tiredness,concentration and memory. Just wondering if anyone has had similar problems and could offer any advice