Do You Know What is Worse Than Having MS?

[KatieAgain]

Hi, I am going to be 61 this year but someone told me I would probably not see 60 (drum roll here) some years back, I all of sudden went from having just your nasty MonSter to having a huge lesion(Balococentric M.S) and a lot of new lesions that they called I think it was schilders M.S.
Who ever told you this,((I turned 51 last week. That is old to many, still young to a few. But I have been told, due to the nature of my MS...I most likely will not see my 65th birthday. And I have come to peace with that. We all have crosses to bear.))
Did whoever told you this spell their name GOD? You could rebound right back or not but nobody knows a friggin thing when it comes to the MonSter. I am not trying to foster false hope but gee I am not supposed to be here right now .
Good Luck We All Need It. Fight on
PEACE

Tortis

Thanks Tortis. So you know how it feels to be given a timeline. Glad you proved them wrong!

Actually a few Neuros have told me I have a great chance at being one of those "MS Statistics". You know the kind that no one likes to talk about? Thing is...it truly is about location. Everytime I get a Cervical Lesion...it is in an area that is Prime Real Estate. And that part of the Neighborhood is responsible for my breathing. I have been lucky that it keeps healing. But it rears it keeps rearing ugly head...and one day if it demylinates too far....well you know. My luck is going to eventually run out. Or if I get pneumonia...oh geez. So although, nothing can be for certain when it comes to MS...I really try to live for the day.

I would take a 50 more brain lesions if I could get rid of that one Cervical Lesion. When it rears it's ugly head my MRI Report is always flagged and it says, "URGENT. IMMEDIATE MEDICAL ATTENTION REQUIRED!"

My ultimate goal is to get one Social Security Check...and I can't get that until I am 67...

[KatieAgain]

Hi Katie,

I am so sorry you had a bad mri report. I hope you will be able to stay on TY since you sx's have gotten better.

Me too! Thanks.

[diomed]

I can only think of a few things worse than this *** disease. ALS and major Cancer. I so understand your frustration. I was in tears the other day cause I am getting worse. I will see my Doc on the 16 and he will probably do another MRI(Brain and spine) and another EVP. The last week has been horrible. I have trouble; getting undressed and dressed, going to the bathroom with out having accidents(yes, #1 and #2-thank god for absorb able pads), wiping after I am done(thank god for flushable wipes), I am cold all the time indoors, my cognitive ability is really bad, can't cook at all, preventing falls(I had one again today trying to get dressed after my shower), showering standing up(I have to sit down on a shower seat). I am slowly starting to realize that I might need a caretaker and it's humiliating. There are certain things one needs to do in private. I would rather have type 2 diabetes cause I would still have fully function of my body. I have no problem controlling my diet. I think it would be fun to actually cook clean, low carb foods again.

[KatieAgain]

I can only think of a few things worse than this *** disease. ALS and major Cancer. I so understand your frustration. I was in tears the other day cause I am getting worse. I will see my Doc on the 16 and he will probably do another MRI(Brain and spine) and another EVP. The last week has been horrible. I have trouble; getting undressed and dressed, going to the bathroom with out having accidents(yes, #1 and #2-thank god for absorb able pads), wiping after I am done(thank god for flushable wipes), I am cold all the time indoors, my cognitive ability is really bad, can't cook at all, preventing falls(I had one again today trying to get dressed after my shower), showering standing up(I have to sit down on a shower seat). I am slowly starting to realize that I might need a caretaker and it's humiliating. There are certain things one needs to do in private. I would rather have type 2 diabetes cause I would still have fully function of my body. I have no problem controlling my diet. I think it would be fun to actually cook clean, low carb foods again.

I am so sorry diomed. Wish I could give you a hug. One thing I never want is a caretaker...Ms. Independent here. You sound like me when I am in a full blown flare. I usually drop a good 20 pounds because I can't cook in a flare. And yes...some things absolutely require privacy.

I hope your doctor figures out some way to help you and you get to feeling better soon.

[Thinkimjob]

Diomed, thank you for telling it like it is. You really are speaking "truth to power", because no one really wants to admit how bad this can get. I can't believe, well I can, how it is that there is nothing that helps with this thing at all long-term or even short term.

(Street dealers for 'roids are starting to look good. Couldn't walk down to find them, mind. And we don't have a 'hood here in Goondiwindi.)

It is an endless round of adjusting to small humiliations, and pain and fear. And every time you pull yourself up, and wipe the dust off, and have a deep breath, something else comes along and knocks you off your feet.

Still brave.

[Tawanda]

I can't believe, well I can, how it is that there is nothing that helps with this thing at all long-term or even short term.

Wow! You've done it! Exposed that big, smelly pink elephant in the room. It's been 10 years since my dx and I have yet to see any MSer, including myself, screaming from the mountain tops about how their treatment has improved their quality of life! MS sucks!

[dyin_myelin]

It's 9 O'Clock in the morning, and I could sure suck down some alcohol right now. Not suppose to drink...think I am going to change that stupid rule!

Girl, make yourself half a bloody mary, and when that lesion rips through your spine, you'd better be at the best cafe in Paris. Seriously, I think about you a lot and what you posted broke my heart. When I was going through the flare, I thought one more of these and they're going to have to dig a hole. I just couldn't believe that was your reality, you are much stronger than I could ever be.

[KatieAgain]

Girl, make yourself half a bloody mary, and when that lesion rips through your spine, you'd better be at the best cafe in Paris. Seriously, I think about you a lot and what you posted broke my heart. When I was going through the flare, I thought one more of these and they're going to have to dig a hole. I just couldn't believe that was your reality, you are much stronger than I could ever be.

Thanks Dyin!

We are TY buddies! I have known about this Cervical Stuff since 2006...that is when I threw in my military retirement papers. The cervical lesions keep healing...but this one which popped up last year is being really stubborn. I have been able to go several years without them...and I keep holding on to the Hope that this one will heal as well. I think not having symptoms is a good sign, but I am stilled concerned.

My brain is actually pretty good. This disease is so crazy.

My MS Specialist last year looked at my MRI while I was waiting in his office. He comes in and says, "We have to start you on TY immediately." I said...I have not had a JCV Test in two years. He said, "We will do one, but you have to be put on TY no matter what your titer number is." I already knew what he was alluding to...no discussion was needed. I was on TY a week later.

I am still planning on going to Europe later on this year, and I am drinking wine every day I am there. My family are the ones that told me to go. They encourage me to do everything now vs. wait. I think that is good advice.

[misslux]

Katie, hang in there!

[Temagami]

Don´t know if this will lift your spirits or not but the MRIs are not so predictive, but about a month ago, they realized that the evoked potentials do have predictive ability for your 20 year out EDSS score. If you´ve had EP scores and are willing to know what they are, maybe good news awaits. I took the plunge and went and got mine knowing it would either make me cry with joy or sorrow.

[KatieAgain]

Don´t know if this will lift your spirits or not but the MRIs are not so predictive, but about a month ago, they realized that the evoked potentials do have predictive ability for your 20 year out EDSS score. If you´ve had EP scores and are willing to know what they are, maybe good news awaits. I took the plunge and went and got mine knowing it would either make me cry with joy or sorrow.

No joy here.

I miserably failed both Visual and Sensory EPs fifteen years ago. And the scores were even worse last year. So, here I am 15 years into my diagnosis and now it seems even bleaker.

In actuality, the only EDSS score that I am looking forward to right now is a perfect 10.

[Fed Up]

Hi KatieAgain,
I wish I had a dribble of your courage and stamina. I'll be 61 next month. And some 1st Southern Baptist prayers are going your way, hopefully, the lesion is on the mend and you'll retain your abilities. fed

[tommylee]

It's 9 O'Clock in the morning, and I could sure suck down some alcohol right now. Not suppose to drink...think I am going to change that stupid rule!

Wow Katie, You sound sort of angry???

Perhaps completely pissed off may be more accurate?

I understand and would like to join you for a drink or seven but this crappy illness has ruined that escape for me as well.
Feel like poop everyday. Alcohol just make me feel worse.

But I have MS so I just get the "Keith Richards" size hang over but never any party. (WHAT A JIP!)

Fifteen years post Dx and I got "sucker punched" with Tumeactive MS last summer.
After years of taking care of myself, being a food Nazi, keeping fit... Tumeactive lesions started to burst in my head giving me rapid losses with no warning.
Sometimes it feels like regardless of attitude, I can't win!
I am 49, keep fit as possible, live a clean life...and doubt I will make 65.



Oh well... I need to get out and pump myself up for the next big disappointment!

[KatieAgain]

Wow Katie, You sound sort of angry???

Perhaps completely pissed off may be more accurate?

I understand and would like to join you for a drink or seven but this crappy illness has ruined that escape for me as well.
Feel like poop everyday. Alcohol just make me feel worse.

But I have MS so I just get the "Keith Richards" size hang over but never any party. (WHAT A JIP!)

Fifteen years post Dx and I got "sucker punched" with Tumeactive MS last summer.
After years of taking care of myself, being a food Nazi, keeping fit... Tumeactive lesions started to burst in my head giving me rapid losses with no warning.
Sometimes it feels like regardless of attitude, I can't win!
I am 49, keep fit as possible, live a clean life...and doubt I will make 65.



Oh well... I need to get out and pump myself up for the next big disappointment!

I am very familiar with Tumeactive MS. Yes...you too got sucker punched.

I am POed. You nailed it. Still am. I did everything right too, but I just can't seem to catch a break.

I usually set the bar pretty high when it comes to expectations. I should have known better.

I am drinking a glass of wine each night now...it helps me sleep. So tonight I will drink a glass for both of us.

Here's to hoping that something positive will come knocking on both of our doors.

[diomed]

I am so sorry diomed. Wish I could give you a hug. One thing I never want is a caretaker...Ms. Independent here. You sound like me when I am in a full blown flare. I usually drop a good 20 pounds because I can't cook in a flare. And yes...some things absolutely require privacy.

I hope your doctor figures out some way to help you and you get to feeling better soon.

Thank you so much for the hug offer.

So, I saw my doctor and he immediately ordered steroid treatment at my local hospital. Three days in a row I had to sit and wait for the drips(IVs Wed, Thurs, Fri). Then that Saturday I had to endure the two MRIs only to find out that I have no new lesions. I HATE, HATE, HATE this disease. What is a flair? I thought that only happened when you had new lesions. So, all I got out of this steroid thing(my first time EVER), was minor improvement of my bladder control, a couple restless nights(even with sleeping aids) and a bad case of acne. I still have severe fatigue and cannot do anything worth a crap around the house.
If I ever get so bad that I need someone to help me go to the bathroom and bathe, I will hire someone to take me out. I am not kidding.