New Diagnosis of Primary Progressive

[HVAC]

I went to my new Neurologist today. I liked him very much. He said I definitely have Primary Progressive and have had it since childhood. He says the good news is it is progressing very slowly. He is not sure if the Copaxone will help but he is keeping me on it any way.

[grannyhotwheels]

What an awesome attitude you have.  I also have PPMS and while mine is not progressing quite as slow you still give me inspiration.  I thank you for that.  I will keep you in my prayers for your progression to remain slow and also for the good Lord to allow you to keep your positive attitude.

I try very hard to keep good thoughts but some days are harder than others.  This surgery thing has got me down in the dumps a little but I'm trying to look at the big picture by seeing how much better I'll be once all these infections are gone.  Keep your head up high and remember that we are all here for you through the good and the bad.

I'll be praying,
Carol

[Quixotic1]

I was unhappy to see this development for you.  But, PPMS can progress quite slowly and I hope that this happens for you.  We will be watching all the treatments that might have potential for PPMS, won't we?  Tho, my neuro feels I do have RRMS, he also stated my disease seems highly waited on the side of direct axonal degeneration which is the disease process seen in PPMS, so we'll watch together.

Many hugs.  You are a backbone here, and I hate the bad news.

Quix

[Lulu54]

Alex,
how are you doing with this today ?  Just wondering and thinking of you.

my best to you,
Lulu

[Eyesnlegs]

Sending warming hugs across the sea, you are an inspiration to many of us here and a new label does not change who you are.

I hope you continue to be our very own inspirational snail.

Love
Pat x

[Zacksmomi]

My thoughts and prayers are with you.

Lets hope your progression is as slow as a snail stuck in molasses hows that?

You know we love you.  Attitude is 90% of the battle and in that you are a champion.
Wishing you all the Best
D

[Fluffysmom]

Alex,

I know that you continue to breathe through this latest stage of acceptance, and as my aqua instructor once said, the secret to long life is to keep breathing.  :o)

I also hope that the progression is slower than molasses in January.  Keep your chin up!

Kathy

[shoshin]

I am sorry about your news. None of knows how our MS will progress, but PPMS conjures up a dismal image and it is difficult to have no real treatment options at all.

When I was first being dx'd, I was convinced that I had PPMS and read a lot about it. I've also read a number of articles on the natural history of MS just because I find it fascinating. Anyway, as others have said, despite the widespread image of rapid and severe progression, PPMS actually has a variety of courses and can be quite mild.

I hope that your MS continues to progress slowly and that it takes frequent breaks.

sho

[PastorDan]

We are with you, Alex, as long as the Lord will allow.

[HVAC]

Thanks everyone. I am still in shock this morning. I know I will get over it. PPMS just sounds more scary than RRMS. May be because the Doctor tells me there are no drugs to slow the progression. I am staying on the Copaxone even though I have felt my legs getting worse even on it.

I am going to defy this thing as long as I can.

Alex

[michelleric]

(((Alex))),

I am sorry to hear of your updated DX. Hopefully you will be able to keep that positive attitude going...I am thinking of you and sending big big hugs,
XO,
Michelle

[saveone]

Well Alex I don't know of anything I can say that hasn't already been said.  I like the others hope it continues to progress slowly and I admire your strength.

take care and live well,
terry

[supermum_ms]

Bugger! Bugger! Bugger! Thats seriously not fair, when I think of everything you've crawled your way through, and it was MS all that time.

I've always thought you a bit of a 'Legend' and yes brave to still be so giving of your self, I see your gentle strength in your art and in the way you tell your story.

I'm at a loss to how you would be feeling, gather your loved ones close and feed off their love and strength whilst your taking this news in.

Take care!!

JJ

[Lulu54]

Gosh Alex, This sure came out of the blue, at least to me.  I am so sorry to hear the neuro has renamed your MS, but we have to remember it is just a name.

Keep your positive attitude going and remember we are all hear anytime you need us to kick this new idea around.

be well,
Lulu

[doublevision1]

ditto to all of the above, this is some major news and you seem to be handling it very pragmatically.  That PPMS can move very slowly is something I have come across many times in my own reading, and although there really is no definitive way to predict any of our furtures for any type of MS, the recurring theme seems to be that your own particular past is the best predictor of your particular future.  This would seem to give reason to be encouraged in your own situation.  PPMS does not necessarily = wheelchair, just like any other form of MS.  Take care.

[Udkas]

Alex,

Wow you seem to have a very positive outlook, I hope that your MS indeed does stay like a slow snail.

Wobbly

I hope that your MS is also like a slow snail.

I just want to ditto what Ren has said as she has summed it up so well, and I also like Tarter's bit about the snail.

Take care,
Cheers,
Udkas

[rendean]

I like tarter's analogy that your PPMS moves like a snail.

This dx explains so much mentally and physically. I'm sorry that you have this form but am so glad it is progressing this slow.

The others are right, you take everything in stride. I don't think I would be as strong and tough as you are.

Sending hugs and good thoughts your way!

Ren

[tarter]

To HVAC,

Alex, You always take everything in your stride and your last post of being hopeful and positive for the future. Just proves in can work, like it has for you.

Hope the PPMS moves like a snail and you stay strong and positive.

Best Wishers tarter

[sllowe]

Hey Girl,

Gosh Alex.  That chin of yours is tough as nails. I'm proud of how you handle many things, but this one especially, today, despite knowing for certain now, you still maintain your posture.

And you Andie, so nice to see you. I always feel if I see you on, that all will be ok. But I I think I now need to pray for that brake job. Especially for all our PP MSers.

Thinking of you both.
(((hugs)))

[Wobbly]

well.. I hope it continues to progress slow for you.. I too have PPMS and I have noticed changes happening slowly too for me...but not really slow enough for me..

take care hon
wobbly
dx