Update on my MS.. and appt.

[Wobbly]

First I want to say thank you for all the advise on Gabapentin... I spoke with the MS Specialist and she doesn't think 100mg of Gabapentin should give me this reaction.... so it could be me.  She also informed me I have PPMS, she was being professional and told me about it being progressive but that it could level off for sometime and not alway just keep getting worse.

She wants me to keep my Appt with the other Dr at the MS Clinic who will deal with my Physio and Medications... and she wants me to discuss my symptoms or side effects with him next week.  She thinks it might be like someone here mentioned that I take 300mg at bedtime and a different amount through the day...I should try to equal it out?  

She said to keep seeing this other Dr and he will let her know how things progress and let me know when to see her again for exams or MRIs... I can also call her anytime I need.

She did a shorter Neuro exam...abit different then the others I've had...like walking backwards... which I couldn't do at all... I could not put my foot behind me?  I did walk on my toes and heels which I've never been tested for before?
the finger to nose was not good...alot of tremors there.

so that's it for now, my hubby came with me and we talked about how we both feel, about our future etc.  We will make the best out of this and take it a day at a time.  

thanks for being here guys..
Hugs to all
take care
wobbly
dx PPMS

[michelleric]

I am so saddened to hear of your dx of ppms. My thoughts and prayers are with you.  I do hope that you will have a slow progression.

I am sending you big huge hugs to you, please rely on all the support here on this forum. This forum has truly been a lifesaver for me, literally, and it continues to be that for everyone. I am here for you for a shoulder to cry on...

Warmly,

Michelle

[Rena705]

I am sooo sorry to hear that the answers you were seeking for so long ended up being PPMS.  It just doesn't seem fair to you that it took so long to figure this out and I know how you have struggled through this battle to find a diagnosis...the least they could have done is not made it so serious.  

I hope that for your sake that this will not mean further disability for you...I know how hard it has been on you.  I hope that the dr. at the MS Clinic will be able to provide you with something that might slow down the progression of your disease and therefore giving you more time to enjoy life!

Wobbly, you have spent so much time and effort struggling to get a diagnosis it must have been a great shock to find out it's PPMS.  My wish for you is that now that you have a diagnosis you can take a bit of a break and just spend time pampering yourself and getting over the stress you have been through.  Please know that I am always lurking around here and if you need to talk I will be here for you ok?

Again, I am sorry to hear about your diagnosis but I am happy that you finally have one and you don't have to fight for some answers on a diagnosis any longer.  I hope that you get a wonderful Neurologist at the MS Clinic because you really deserve to have someone on your side in your battle to overcome the struggles that you face.  I will be thinking of you and looking forward to hearing what the MS Clinic is going to offer you.  

Keep in Touch and Lots and Lots of comforting hugs are being sent your way!

Rena

[Wobbly]

My friends you are so special to me and having you guys here REALLY helps me alot with this.  

I will try to remember I am still me and that won't change.  I will take one day at a time and do whatever I can to help me stay strong.

I'm feeling better now then I did this morning, you all help me with today.

And I'm so appreciative that I have this wonderful forum to come to and chat or ask questions.  

Thank you so much...
Wobbly
dxPPMS

[saveone]

Dearest Wobbly, I am like Udakas, at loss for words.  I know that even when you know something in your heart it is still devestating when it is confirmed.  I think that is because we always hold onto that little piece of hope that maybe we are wrong and it will just go away.

I am so glad you have a husband who loves and supports you.There are many ppl who would envy you that but I rejoice for you.  I am with Lu in that you are the same person you were yesterday, today you just have a label.  

I know you will grieve for what you perceive as lost but don't forget that no matter what happens to our bodies, it is just the shell welive in.  The part that is truly you, that which makes you unique cannot be touched.

Sending you many many hugs, terry

[Udkas]

Hi there,
I don't normally get stuck for words, but I am stuck, I kinda don't know what to say.  I am sorry you had this diagnosis, I am glad that you have the support of your husband, Dr  and the forum.

Have a good cry, it usually makes us feel better, releases our tension.   I don't think anyone can accurately predict the course of MS with certainty or anything in life for that matter, there are always exceptions to rules, i hope you are an exception.

Thinking of you, hugs,
Udkas.

[Wobbly]

thanks lulu... I'm hangin in there.

bio..
this info is helpful...not sure how to find info on PPMS...it doesn't seem to be around much online.  I only have a few enhancing lesions... they even enhanced when I didn't have contrast, which surprised the Neuro.

my LP was Neg three years ago...and I havn't had another one.

I'm using a cane now, last year I only used it once in awhile, but now it's a daily thing.  I also purchased a walker last year, but find my legs get too weak to go for any walks more then a block.  And no slopes at all...

my legs are one of the bad symptoms I have and confusion, tremors, pain. etc etc...

thanks again
wobbly

[biowham]

Sorry...that was after 25 years, not 20 years.

Bio

[biowham]

Wobbly, because my docs lean to a dx of PPMS for me, and I'm pretty sure that's what it will be ultimately...I've done a lot of research on it. I don't know if this will help or not, but...

1. Do you have any enhancing lesions? If you do not, or have very few, that's a positive in terms of progression; i.e., people with no or few enhancing lesions and PPMS progress less rapidly/severely as a group.

2. Do you have a positive LP or not? I'm sorry I don't remember, but it seems like yours was negative. That's also supposed to point to a better long-term outcome in terms of rapidity and severity of progression.

3. One long-term study found that in a good-sized cohort of patients, 25% after 20 years still required *no walking assistance.* That means, not even a cane, as far as I can tell from their description. That's a full quarter of the cohort, 25 years after diagnosis. For me, that's at least 25% hopeful.

No one knows the course that PPMS will take, but there are these minor indicators of how it MIGHT go. The advice I see again and again is this: Take it one day at a time. Every sunrise and every sunset is a victory to celebrate. I do not by any means mean to diminish or dismiss your emotions about this. I probably feel some of them myself, worrying about my still-young children, my love of hiking and being outdoors, my two-story house, the pain, weakness, cognition problems...and I guess that's why "they" say: One day at a time.

You are in my thoughts. Please feel free to PM me if you'd like to chat.

Bio

[Lulu54]

strong should not even be a consideration right now - you have enough to work out right now and being strong isn't one of them.

Don't lose sight of the fact that you are still the same person you were yesterday, before the doctor gave you a new label.  The name PPMS doesn't define you.... L

[Wobbly]

thanks for just being here... I don't feel so alone..
I wish I could be stronger...but right now...it's so hard.
wobbly

[Lulu54]

Dear, you go ahead and cry all you want - I know I did when I heard your news.  This is so sad - and its ok to take some time to feel the emotional pain.  If you run out of kleenex I will ship you another case, ok?  

In a few days you can get back to working on being strong - but today is meant for grieving and allowing all of us here to support you in any way possible.

love,
Laura

[Wobbly]

thanks for the support and prayers.. I'm just so glad that I have this forum to chat with and my hubby is glad for this forum as well.  He always asks me if I've been online with my friends here, and how things are.

I'm trying to be strong, but at the moment having a difficult day... can't seem to stop crying... it's not a surprise to me... I kind of guessed it was PPMS.. but it's a hard reality to deal with.  

thanks again
ttyl
Hugs
wobbly
dx PPMS...

[essdipity]

Gosh, this is not good news. I hope you'll be getting the best possible care and treatment. If you have trouble adjusting to one of your meds, make sure you contact the neuro or nurse so you can work on getting it right.

Meantime, chin up. You know we're always here for you.

ess

[sllowe]

Hi Andie,

I very much wish it weren't so Wobbs. Hoping the appt. goes well today and that you do get that leveling off the specialist speaks of.

Thinking of you honey - with you all the way, and sending you (((BIG HUGS))))

-shell

[PastorDan]

We will pray for God's almighty touch to make it right.

My late mother-in-law woke up in ICU once, after suffering a heart attack in her hospital room.  Loretta said "We thought we'd lost you, Mom."  She replied "I thought you'd lost me too, but my God made me a promise:..."

She then quoted Isaiah 41:10, in perfect King James English: "fear not, for I am with you;
be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with  my righteous right hand."

[goofysmom1]

I am sorry to hear your news.  I too wish a very slow progression for you - and hope that you and your husband will have many good days and very few bad ones.

Sending you hugs of support,
Chrisy

[Lulu54]

Dear Wobbly,
This is definitely not the news we would have hoped for you at today's appt.  although I think you had your suspicions about the final word here.  I am so sad for you, but know that you and your husband will work through this together.  I will now hope for you that your MS slows to a crawl and you have more happy days ahead than ones burdened by this horrible disease.

I wish I could do more to change this day for the better,

lots of love to you,
Laura/Lulu