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ThePeacocksWife

Recently diagnosed forum virgin

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ThePeacocksWife

Hello out there. I’m not sure of forum etiquette so forgive me if I’m doing stuff wrong & please do correct me! 
so, I was diagnosed with PPMS in August last year after approx 15 months of investigations, scans & odd symptoms that had me feeling like a complete hypochondriac.
The general neuro consultant who gave me the diagnosis discussed a raft of referrals he was making & off I went to wait for appointment letters. And I waited & waited & waited - but received nothing - not even the usual copy of the repost sent routinely to GP. Chased it with the dept admin & was told to “be patient” 

Turned out some admin error led to no action or referrals being done for months & I just got fobbed off over & over. Only got sorted when I reluctantly complained to the trusts PALS service. 
So - I now have a first appointment with the MS team on 24/2/20. I’m hoping it will result in some treatment and advice, and an intro to the MS nurses team as ppl say they are the best ppl to talk to about your ongoing symptoms/issues. 
I’m waffling - but basically am wondering if anyone has any advice or suggestions of things to ask the consultant and/or team during a 1st appointment that would be useful to know - having waited so long to see the MS specialists I want to make the most of it. 
Thank you! 😊

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Procrastinating
Stumbler

Hi @ThePeacocksWife and welcome.

 

You did the right thing in chasing things up. As you witnessed, mistakes do happen, which is common when humans are involved. We make mistakes.

 

Questions to ask are really about managing the here and now, like what can you do to treat any annoying symptoms. Then there is the future, what can you do to prevent the MS getting worse. Up until recently, there were no treatments for PPMS, to try and prevent progression of the MS. But, this has now changed with the approval of Ocrevus. So that is a discussion point.

 

It's always wise to be accompanied at these meetings. Two pairs of ears hear more than one pair.

 

As for forum etiquette, you're perfect. So, no problems there.

 

Please let us know how the meetings go. And , please ask if you have any further questions.

 

:moonieman:

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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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ThePeacocksWife

Thank you @Stumbler - some great advice there which I definitely find useful & will add to my list for the appointment. Much appreciated. 

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Procrastinating
Stumbler

@ThePeacocksWife , make a list of your questions and take that with you. It saves you forgetting anything.

There will also be follow-up meetings for anything further that comes to mind.

 

:moonieman:

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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

Do you know yet who/what your MS "team" will be made up from? If not, you might also want to consider whether you might need more physical things like physio, a home visit by an occupational therapist ( OT) to see if there's anything that could be made easier for you at home, a bladder/bowel/continence nurse, etc. It's the MS nurse who tends to deal with and arrange the suchlike.

 

5.%20ms-appointments-ms-trust.jpg
WWW.MSTRUST.ORG.UK

Here are some suggestions on how you can make the most of your appointments with health professionals in your MS team.

 

  • Thanks 1

Marina

(belated DX in June '05, SPMS)

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ThePeacocksWife

Thanks so much @Marina more really great advice & tips. I don’t yet know anything about the team I’ll be under. Not heard from the nurse team but I’m hoping that will be established at my appt on 24th - as yourself & others have said the nurse team is invaluable & the first port of call. 

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ThePeacocksWife

Oh yes @Stumbler - I’m becoming a mistress of lists 😂 brain fog can strike at the most inconvenient of moments so lists are a Godsend! 

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