Finally Diagnosed

[SharleneMA]

I had my appointment at Brigham and Women's Hospital yesterday and was told by the doctor that I have Primary Progressive MS.  She gave me 3 prescriptions - one for Cellcept to slow the progress, one for PT and the third for a scooter.  That last one got me teary.  I thought I was years away from that but now see that it is for the best.  It will give me what I need to go out more.  Also had to get the H1N1 vaccine and the pneumonia vaccine because she said Cellcept suppresses the immune system.  

Not sure there's much more to say.  

Sharlene  

[SharleneMA]

Thanks, Michelle.  

The good thoughts are deeply appreciated especially today.  I seem to be in a funk, for lack of a better word, today.  Maybe it's the weather, dreary and gloomy, here in Boston or maybe it's just that I'm realizing that there's nothing they can do to improve things just to slow the progression.  

Whatever it is I'm glad for the distraction of being at work.  

Sharlene

[michelleric]

I am sorry about your diagnosis. I am glad you are "ok" for today, and know that if you are not "ok" some days, that is "ok" and normal. Enough of OK, just wanted you to know that I am thinking of you and sending good thoughts you way,

Welcome to the forum here,
Michelle

[SharleneMA]

Thank you for your kind words.  I'm okay with this, for today at least.  :-)  Maybe that's because I just don't understand the significance of the diagnosis.  Time to read more I think.  

Sharlene

[Lulu54]

Dear Sharlene,
You have just heard words that none of us can be prepared for - PPMS as your diagnosis must have been a shock.  But now you know what you are facing and be  as proactive as possible.

We have a few members who have recently been dx'd with PPMS and I hope they can help you with your questions.  

Living in the present for today is so smart - I hope you can keep of that mindset.

Having  paper and pen by the bed often occurs to me too - usually in the middle of the night when I think of something.  Of course, I forget most of those thoughts by the time morning rolls in.  You might want to get that notebook out as an aid.

Welcome to this side of the mountain - it can be quite the climb to get on  top of this diagnosis.  We're here if you need to question, rant, or even laugh.

my best,
Lulu

[SharleneMA]

Thank you all for you kind words of support.  It's been 3 days since the appointment and I'm really okay with this.  I do occasionally worry about the future but I'm trying not to think of that too much.  It would drive me crazy.  

My concerns right now are of a practical nature.  What kind of scooter to get?  Where will I store it while I'm at home?  Where will I put it while I'm at work?  Will the Cellcept make me sick?  Stuff of that nature.  Oddly enough, thoughts occur in the middle of the night.  I really need to put a notebook and pen on the nightstand.  

Does anyone out there know about Cellcept and what I can expect?  Any information would be helpful.  


Sharlene

[HVAC]

Hey,
Sorry for the diagnosis. Be kind to yourself. You will probably go through a roller coaster of emotions. We are here for you.

Alex

[rendean]

Hi,
Tarter is right. Stay positive. My previous post doesn't sound encouraging in retrospect but it should have. There are treatment and the Cellcept is one of them. I hope that it will work well for you.

Sending good thoughts and hugs your way,
ren

[tarter]

To SharleneMA,

I am sorry to hear that you have progressive MS this must have come as a shock and  being diagnoised after a wait.

The info i have read on the health pages here is positive in as much that more can be done today to slow things down.

I would get as much help with meds and tools and stay strong eat and rest well and remember you have friends here to talk with.

Take care and stay positive tarter  

[rendean]

I am so sorry to hear of your diagnosis. The scooter will let you save your energy for the more important things you want to do. Not that it equals a scooter but I had the same emotions about being prescribed a walker for bad spells.

The scooter doesn't define who you are. It is simply a tool to help you reserve your energy. Several people her have scooters and they have discussed their feelings about this.  Hopefully they will chime in on this subject later.

Sending warm hugs,
Ren