Last reply 6 years ago
What Type of Ms

Hi,

I was diagnised with MS a week ago but the doctor didn’t really give me any information about what type of MS I have and just said I would heard from the MS society at another hospital…is that a normal thing or should I have been given more information? Luckily my symptoms are v mild.

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Lillylilly
6 years ago

You probably have Relapsing Remitting. I think most people start off with that one, it’s the most common. My Neuro was the same, very vague. Has your hospital got an MS nurse you can liaise with?


MarieLouise
6 years ago

he is referring me to another hospital which i assume has the ms nurses there. its a bit like im in limbo as i only have very basic info when people ask me about my ms diagnosis so i havent told my work yet or the dvla because i dont really know what I am telling them..


Gav
6 years ago

as far as the dvla goes, the need to be informed that you have MS, but you don’t need to tell your work you have MS if you don’t want to, unless you’re in the army, fire brigade etc.


Gav
6 years ago

I should also point out that you need to give yourself time to come to terms with your diagnosis, as you’ve said its only been a week. I’m sorry I can’t be of any more help to you.


MarieLouise
6 years ago

Thanks both. I’ll chase up the referal im waiting for so I can get some more info about it and leto the dvla know about the diagnosis. i just wasn’t sure if if not knowing exactly what type of ms I had would b a problem.


MarieLouise
6 years ago

On another note – is there anything that I shouldn’t be doing or should be doing to help with symptoms i.e stop drinking alcohol, eat more fish, exercise?


Gav
6 years ago

Alcohol is a bit of a wierd one, some people finds it actually improves their symptoms, others find it makes things worse, I guess you just need to try it and see what happens, although obviously try it somewhere safely 😉 As far as the fish thing goes, there has been anecdotal evidence pointing to the benefits of the fish oil, certainly won’t do you any harm. As for the exercise part, I’m a strong advocate for it, but just don’t over do it.

Now for a spot of shameless self promotion, you might find this video I did on my MS useful, it’ll help you make some sense out of it at this time http://www.youtube.com/watch?v=TVK-DXtU6wE

If you want to chat, you’re welcome to message me =)


MarieLouise
6 years ago

Cheers for that 🙂


GMG
6 years ago

The MS Society is a good starting point for information if your doctor wasn’t very helpful, as is the MS Trust. Both produce a wide range of leaflets on all kinds of things which you can send off for or download. Once you get referred to the MS Nurse, find out if there is a ‘newly diagnosed’ course in your area. I’ve been attending one and it’s brilliant – different support workers talking about different aspects of MS – dietician, continence nurse, welfare & benefits, exercise…. You can also do a search on the internet to see if there is an MS Therapy Centre near you.


munchies
6 years ago

I got diagnosed 2 years ago and didn’t actually have any contact with an MS nurse except for 10 mins after initial diagnosis. I actually asked a doctor at the hospital when I was waiting to see if they’d let me have my infusion what type of MS I had since I had been really struggling with my walking etc. Doctor said there wasn’t anything in my notes from Consultant and that to be on Tysabri I had to have the Relapsing Remittance MS


janep
6 years ago

Munchies- I am so shocked by that! I can’t believe not only had no one given you the information but it wasn’t even in your medical notes. Outrageous! I heartily agree with GMG’s advice, the MS Society and MS Trust are a reliable source of information, I have nightmares about people just diagnosed doing a google search on MS and being terrified!(This site is amazing too of course!)
Another thing I’ll add is to go at your own pace. I needed as much info as I could lay my hands on when I was first diagnosed, it’s just the type of person I am but I know some people find it all a bit overwhelming. The info will still be there waiting when you’re ready for it!


GMG
6 years ago

Good advice janep – I’m the same in that I wanted all the information I could find, but I know some people don’t like that. You can ask for as little or as much as you want, but I’m concerned that basic information provision seems to be lacking from some doctors. Mine was pretty good and the MS nurse team have been brilliant – my initial contact was an hour consultation and then I’ve seen them at least twice since then at various other support organisations. Maybe I struck lucky with them?!


munchies
6 years ago

I got diagnosed Aug 2009, had 10 mins with nurse, then started on Tysabri Nov 2009. After my first tysabri infusion I felt really terrible – had terrible headache, strange pain up the side of my neck, face and back of my head and was having spasm (not sure if that’s correct way to describe it) type movements in neck/head, shooting pains in legs and was quite worried so much so that I asked my hubby to make sure I was ok next morning. It might sound normal but I hadn’t really had any symptons except for vertigo then loss of feeling in one leg in March 2009 so didn’t have a clue. I rang nurse to be told it was just my symptons rather curtly.
I then didn’t have any contact with an MS nurse until early this year and only because I had to get a blood test incase I was having antibodies to the Tysabri. At the point it was a different nurse who was shocked that i hadn’t had an hour appt shortly after diagnosis and that she would arrange one – which never happened. Then I had to go to docs as the pain was getting so bad, doc didn’t believe you got pain with MS, so wrote to nurse and that’s when I eventually had an appointment with her middle of this year. And that’s been it.
I did try looking on websites as I wanted to get some info. I’m quite a positive person so didn’t panic but did start to worry a bit this year when I was struggling walking and the pain was so bad which is why i asked the doctor at infusion time.
I looked into the facebook MS Society website but it was all doom and gloom and arguing with each other so i was glad when the nurse had told me about this website as people give helpful hints, positivity, useful information as well as sharing their fears and concerns.
This website has probably given me more information than any I’ve tried looking at and I’ve met a couple of lovely ladies – Ghada and Mawson for food!!!
I still feel a bit lost sometimes and haven’t got a clue what’s MS and what’s not!!
I completely agree with you janep. It’s good to hear that you’ve had good support GMG and I hope that Marie_Louise gets that too. Good luck.x


T
6 years ago

From what I’ve gleaned talking to people, experiences of support/information really varies according to where you happen to live. I think once you’ve found a good source of information, whether it’s your MS nurse, the MS Society, the MS Trust etc then it’s important to use that as a starting point from where your network can spread. I met some really helpful people from my local MS Society branch and then from the national MS Society, and from there was put in touch with more people and so on etc. Now I have a really wide network of support, including all you lovely people here on Shift, which I consider myself really lucky to have!

Also, if you go to information days or newly diagnosed courses, then do chat with people. More often than not, it’s been through talking to other people when I’ve learnt the most useful things!

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