Just diagnosed with Multiple Sclerosis - Thanks for listening

[quasar4legs]

Hi cman,

I hope the infusion starts to work soon and you are able to get some relief.


Quasar

 

[cman]

Thanks. Finished the 3 day infusion and today had less soreness but walked around like I had drank a case of beer. I guess it's normal after this and will tapper off over the next few days.

It was hard to hide at work so I just told everyone that noticed that I hurt my back shoveling all the damn snow we've had.

Told the in-laws on Friday and that was tough. I'm 44 and started dating my wife when I was 16 so they are like a second set of parents to me. My FIL took it the hardest as I think he sees only the worse that can come of this. My MIL is a nurse and is more practical so she has the "let's beat this thing" attitude. She took over for the visiting nurse and helped me with the infusions on Sat. and Sun. There just the best in-laws anyone could ask for.

Then came yesterday when we sat the kids down and told them. They were both home from college and it seemed like the time to tell them. I"m still emotional about this so I had my wife just tell them that I hadn't been feeling well so I had things checked and I have MS. I didn't want her to prolong the thing anymore than that since I thought not getting to the point would just scare them more.

It turned very emotional and it was one of the toughest moments of my life. But my kids know what MS is having dealt with it with my dad and in a strange way that help to get past the "what the hell" is that moment that might have occurred if I told them I had some strange disease they had never heard about. They are sad and I told them I am too but everything will be all right and we'll just roll with the punch.

I've told my brother, SIL and BIL and each have taken the time to text the kids and let them know it will be alright. I could sense when talking to the kids this morning that the family support has helped them get over the fear they had yesterday.

I have a great family and thank God for that.

All that's left now is to tell my folks and I dread that the most. Hopefully when they return from their winter trip to Florida I'll have better news for them.

Thanks again for listening. We have such a love for Disney that in some way I think I'm talking to friends I've known forever.

 

[quasar4legs]

Hi cman,

Sometimes I think having to tell these things to the people we love is one of the hardest things to deal with.

I am so glad that you have a loving and supportive family, it is a great blessing and I hope you are all able to find strength together.
My sister and I were 17 and 18 when my dad was diagnosed with a serious disease and although it was a tough time I am glad my parents were honest with us.

Hope the infusion improves things soon and that the neurologist can find some medication that will help reduce attacks in the long term.

Take care and don't forget your 'dis' family are always here to listen and have a chat.
Quasar

 

[quasar4legs]

Hi cman,

Thinking about you today and wondering how things are going? I do hope the infusion has started to make a difference to some of the symptoms.

Take care of you

Quasar

 

[cman]

Quasar,

Thanks for asking. The infusion hasn't had much affect except I felt pretty bad for a few days after it took them. It was really hard to hide at work and since I haven't decided when I will tell me employer it was a tough week.

I have one each month for the next 5 months so maybe I'll see improvement as time goes on.

Thanks again for thinking of me.

 

[mommasita]

It is so uplifting to read about your close family. That is certainly something fantastic to have in your corner.

Sorry it was a rough spell with the infusion. I hope that you may start to feel a little better with the next round.

Hugs to you

 

[quasar4legs]

Hi cman,
I am sorry that the infusion hasn't really been helpful but hopefully things will start to improve soon.
I shall send some positive vibes your way.

Thinking of you and your family
Quasar

 

[ccbayly]

One more thing, a creative Dis'er make me a MS/Mickey art that I put on a shirt. If you are interested, IM me your email and I will send to you. I wore it on our cruise and to WDW and had to email it to about 25 people when we got home.

Hi,

I don't have enough posts to IM you yet. I would love a copy of the art you are talking about. I was just diagnosed with MS and am planning a disney trip. It may help with the "questioning" looks I get when I have to use my cane.

Thanks so much

Carolyn

 

[quentina]

Hi,

I don't have enough posts to IM you yet. I would love a copy of the art you are talking about. I was just diagnosed with MS and am planning a disney trip. It may help with the "questioning" looks I get when I have to use my cane.

Thanks so much

Carolyn

It is in my avatar. If you want it, post your email and I will email to you.

 

[ccbayly]

It is in my avatar. If you want it, post your email and I will email to you.

HUMMMMM...... I tried that and it said I don't have enough post counts to post my e-mail.

how about this:

ccbayly at yahoo dot com

 

[DisneyFairytale]

After watching my dad cope with MS for over 40 years I was diagnosed with MS right before Christmas - 12/23/2010 to be exact.

I'm 44 and for the last 4 or 5 months have had this strange hyper-sensation in my right arm. Growing up as a kid I could remember my dad dealing with this all the time. I decided to go to a neurologist to have it checked, convinced he was going to tell me it was a pinched nerve or something.

After an MRI, where lesions were found on my brain and spine, and a spinal tap it was confirmed that I have MS.

I've spent the last few weeks looking back at all the times I had symptoms of pain and soreness in my legs and feel that I've probably been dealing with this for the last 3 or 4 years.

Even though I had the symptoms I just thought they were the result of a middle aged guy who runs 20 miles a week for exercise and is involved in other sports activities.

I kept telling myself that was the reason and If I cut back on the running I'd be fine. But as I cut down on the running I still had the symptoms.

I've been involved with coaching my son's baseball teams for 13 years. I noticed that I could no longer do certain things the last few years but again thought it was just my age catching up to me. I remember many times telling my wife I felt as if i had just played nine innings instead of my son.

My wife and I decided not to tell anyone until after the holidays and our trip to Disney 1/1 - 1/9. Now it's time to let people know.

My mother-in-law has been a nurse for 40 years and will be a great source of support. Along with my father-in-law who is one of the most compassionate men I know. It will not be hard to tell them but I know since they've known me for 30 years it will hard on them.

My kids, who are 18 and 19, are two of the greatest kids parents could ask for. I don't want to burden them in any way as they are in college and just starting the spread their wings and grow as adults. I know it will be hard on them also but I'm hoping that like all kids they'll be resilient.

My biggest fear is that one of them will development this crappy disease. There seems to be something about my family when it comes to MS. In addition to my father, my cousin (father's sister's son) and his daughter also have MS. This REALLY concerns me.

Since my parents spend the winter in Florida (my dad escapes the cold to cope with things better) and won't be back until April we've decided to wait until then to tell them. It will hit them the hardest by far. What parent wants their child to go though anything that can impact their lives in a negative way. I'm afraid the stress will impact them both but especially my dad.

We decided not to tell them yet because they'll come up with some excuse to come home. There's nothing they can do at this point so I don't want to spoil a time in their loves that they enjoy so much.

They have yet to diagnose exactly which form I have so treatment options aren't known yet. I will benefit from science in a way my dad was never able to so there's some comfort there. For example it took 2 years to diagnose my dad back when he was 30 and 2 weeks to diagnose me.

Who knows where I go from here.

One thing that I know is that after or 5 family trips to Disney (we're DVC members) with all of the above mentioned people there's no better place for someone with mobility issues than Disney. I paid special attention this time, as I had a secret the no one else knew, and can honestly say that no matter how bad things get we will always have a Disney trip to escape to. I can't thank Disney enough for what they've done for my dad. Even before I knew I had MS I was thankful to Disney for providing my dad so much joy.

I am not looking for pity. I will cope with what comes over time and use the examples of the greatest man I know to deal with things.

Thanks for listening.

Sorry to hear about your diagnosis. Don't let it change the way you run your life. It sounds like you're a really great, fun active guy and don't let this get to you. MS has many sides and can vary tremendously in spectrum, so unless it's starting to really effect you, keep smiling dont let your spirits change because thats what will really start to affect you. My mother has had MS for few years, and tho she has days where she needs to take it easy, she has many absolutely fantastic ones where we strut our stuff in Disneyland. A friend of ours is the opposite. She is 23 and is dealing with very severe symptoms and she deals with those as needed.

Keep smiling, stay positive. Good on you for allowing your parents to have a great vacation. Bless you and your family, keep smiling mate. Much love.

 

[quentina]

HUMMMMM...... I tried that and it said I don't have enough post counts to post my e-mail.

how about this:

ccbayly at yahoo dot com

Sent, let me know if you got it.

Kim

 

[cman]

Sorry to hear about your diagnosis. Don't let it change the way you run your life. It sounds like you're a really great, fun active guy and don't let this get to you. MS has many sides and can vary tremendously in spectrum, so unless it's starting to really effect you, keep smiling dont let your spirits change because thats what will really start to affect you. My mother has had MS for few years, and tho she has days where she needs to take it easy, she has many absolutely fantastic ones where we strut our stuff in Disneyland. A friend of ours is the opposite. She is 23 and is dealing with very severe symptoms and she deals with those as needed.

Keep smiling, stay positive. Good on you for allowing your parents to have a great vacation. Bless you and your family, keep smiling mate. Much love.

Thanks for the kind words.

I noticed you are a CM. As I mentioned in one of my posts I have a soft spot in my heart for how Disney and CMs have accommodated my dad on all of our trips. A few months ago that had a completely different meaning to me as it does now.

Thanks for everything all the CMs do.

 

[cman]

I had my 3rd infusion today and I'm hoping that I start seeing some improvements. The first 2 infusions didn't have much of a positive impact.

My parents called tonight to say they'll be home from their winter in Miami (lucky them!) in two weeks.

I dread telling them. I'll have to figure out a way to tell them an quickly make them understand that I'm ok with what I have and what is to come.

Thanks for listening.

 

[mommasita]

I had my 3rd infusion today and I'm hoping that I start seeing some improvements. The first 2 infusions didn't have much of a positive impact.

My parents called tonight to say they'll be home from their winter in Miami (lucky them!) in two weeks.

I dread telling them. I'll have to figure out a way to tell them an quickly make them understand that I'm ok with what I have and what is to come.

Thanks for listening.

Always listening

 

[cman]

Well I finally told my parents.

They've been in Florida since the day I was diagnosed and came home 2 weeks ago. Their first weekend back was Easter weekend and I thought since they had just come home it wasn't the right time to tell them. Besides, each year when Easter comes around I don't want them linking Easter to the day I told them. And for the same reason I didn't want to tell them last weekend becase of Mother's day. So we told them the weekend between Easter and Mother's day.

It was as tough as I thought it would be. Since my dad has MS I knew they would think of all the struggles they've had and think I'll have to deal with the same.

I love them both and they made me feel just as you would expect a mom and dad would. They told my wife and I it was going to be ok and I know I can always count on them for support. There will be tough times ahead but we'll all get through it together.

The one thing that really saddened me was that my mom told me that she just recently told my dad that her prayers had been answered. Since my brother is 47 and I am 44 she had finally come to believe that MS has skipped our generation. It's now my turn to have that same fear for my two children.

Anyway, as always thanks for listening.

 

[quasar4legs]

Hi cman,

I think of you often and have been hoping that things were going OK for you.

It must have been hard telling your parents, I think as we get older we instinctively start to want and protect our aging parents.
I really am sorry your family is facing this but I am sure it meant a great deal to you and your wife to know that there is family support.

How have you been feeling?

Quasar

 

[mommasita]

I am glad that you got that out in the open. It is never easy, especially with those we love.

I can understand your fear with your children. I have that same fear, as I was just told that it is congenital, and I worry for my children, as I would not wish this on my worst enemy. However, today I am celebrating life.

Hugs to you

 

[Sunnywho]

I was wondering if anyone would bring CCSVI up...

I was diagnosed with relapsing-remitting MS in 2006.

Last November I went to an Interventional Radiologist based on research by Paolo Zamboni in Italy and Dr. Zivadinov in the US. They had found that people with MS are much likelier than control groups to have blockages in the veins that drain the brain and spine. (Jugular and azygous veins, respectively.)

The IR found that I had blockages in my jugular. This winter I had them opened through angioplasty. My left jugular was 100% blocked, my right jugular was 80% blocked. These are severe even for CCSVI. It was covered under insurance.

From what I've been gathering, if a person has MS, they are very likely to have CCSVI (chronic cerebrospinal venous insufficiency....) It's made a dramatic difference in my symptoms.

Apologies for bringing this up in your thread if you think it's off-base! I have also gone through the MS diagnosis and telling everyone. It's awful to go through. MS affects everyone in the family.

 

[cman]

Just a quick update.

I've been doing ok - no better but then again no worse. This past Friday I went for another MRI since it's been 6 months since my last.

Now I wait to hear if there are more lesions then six months ago. Crossing my fingers.