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Trace

Type of ms

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Depressed
Trace

Hello everyone I  still don’t know what type of ms I have

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Procrastinating
Stumbler

Hi @Trace and welcome.

 

I don't think I can explain things better than this website. The link is primarily about Relapsing/Remitting ( RRMS), but does provide links to other MS variants:-
 

 

There's a compendium of information available under the "Resources" Menu Option at the top of the screen. But, please ask any questions that you feel are not covered.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Depressed
Trace
12 hours ago, Trace said:

Hello everyone I  still don’t know what type of ms I have

I’m new so still learning on here

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Depressed
Trace

I had my first and only major attack in 2018 they thought I’d got labarynthitis sorry can’t spell lol. Was diagnosed just before Xmas however no major attacks since but I have minor changes on and off. Seem to be suffering a lot with achey legs more than anything and tbh I think I’m still accepting it.

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Procrastinating
Stumbler

@Trace , so you recovered from the majority of your 2018 relapse? If so, you can assume that you have RRMS.

 

Can I also assume that you've met, or been contacted, by your MS Nurse? They should be your first point of contact for all things related to your MS - GPs just aren't that experienced with MS. In particular, you should contact them for any suspected relapse activity. The following link will explain what is, and isn't, a suspected relapse:-

 

relapse%20new.png
WWW.MSTRUST.ORG.UK

A multiple sclerosis relapse is a sudden onset of symptoms that commonly lasts for a number weeks.

 

You will learn to "listen to your body" for any signs that your MS is "unhappy". You will then be able to consider whether there have been any specific trigger points. These could be being over-tired, being stressed, dealing with a run-of-the-mill infection, change of diet, the list could go on.....

 

Can I ask who diagnosed you, title not name? Was it a Neurologist, following an MRI scan and, possibly, a lumber puncture? And has the subject of a specific MS treatment been mentioned?

 

There's a lot to get your head round when you get given a diagnosis of MS. Acceptance can actually take a year or more, so be patient with yourself.

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Depressed
Trace

Thank you. No lumber puncture had a few mri scans I was diagnosed with clinically isolated syndrome then had another mri which showed changes in the brain. My ms nurse is ok but only seems interested if I have a major relapse 🤷‍♀️.

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Depressed
Trace

Yes I’m recovered from that major relapse just have times where it feels like mini relapses if that makes sense

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Procrastinating
Stumbler

@Trace , relapses can leave some residual damage. If it "flares" occasionally. this is where your body is talking to you.......

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Depressed
Trace

Yes I understand.thanks still getting to grips with it all and understanding it. How long have you had me?

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Procrastinating
Stumbler

@Trace , it does take time to realise what you're up against.

 

As for me and my MS, I estimate 35 years from my first definitive relapse. Time flies when you're having fun.......:cry:

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Depressed
Trace

Wow ok so u definitely know what your talking about! How u doing?

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Procrastinating
Stumbler

@Trace , I've been better, I just can't remember when..... :lol4:

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Depressed
Trace

I was looking for meet up groups for ppl with ms but because of the covid they are not meeting in person atm.

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Procrastinating
Stumbler

@Trace , I am aware of some London meet-ups. In the present climate, they're using Zoom for virtual meet-ups.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Depressed
Trace

Yeah zoom has become a big part of interaction now I want something to get me out the house and to talk to ppl about their ms etc

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Crappy
Marina

Hi Trace and welcome! Have a look at the MS Trust’s link below. Put a tick in “Local support centres / groups” and it should hopefully tell you where your nearest MS centre is. Some of them have things like group exercise sessions or even coffee meetings, etc. The "map" can also tell you who and where your nearest MS nurse is.

 

map%20of%20ms.png
WWW.MSTRUST.ORG.UK

Use our map to search for an MS service that is near to you

 

Good luck and I hope you find something that's reasonably open during these coronavirus times... :flowerface:

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Marina

(belated DX in June '05, SPMS)

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Procrastinating
Stumbler
24 minutes ago, Trace said:

Yeah zoom has become a big part of interaction now I want something to get me out the house and to talk to ppl about their ms etc

@Trace , that wouldn't be possible under the present Pandemic Lockdown.

 

:moonieman: 


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Crappy
Marina

@Stumbler, I think that may depend on the individual MS centre or group. For instance, my local centre say they'll be restarting exercise classes in mid-September.

 

@Trace, the MS Society also have a list of various types of groups. If you go the their main home page in the link below, then scroll down till you get to "Find support near you" and enter a postcode, it'll show a list of possible places that might be open for some things during these virus times.

 

20dcb16c2b64482593b038ec753e7006.jpg?sc_
WWW.MSSOCIETY.ORG.UK

We’re the MS Society – a community of people who understand what life’s like with MS. Together, we're strong enough to stop it in its tracks.

 

If you haven't yet got an MS nurse, it might be an idea to try to get yourself one as they might have some ideas too.

 


Marina

(belated DX in June '05, SPMS)

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Depressed
Trace

Thanks 🙏 I really appreciate your responses

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