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Old 01-21-2011, 07:33 PM   #1
cman
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Just diagnosed with Multiple Sclerosis - Thanks for listening

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.
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Old 01-21-2011, 07:48 PM   #2
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Sending hugs to your and your family. My mom has MS, so I understand what you are up against. It took years before she was finally diagnosed. Fortunately, she is now getting the proper care she needs. We are in MA as well and the Lahey Clinic has been wonderful. Once she was able to start the appropriate medication she started to make remarkable improvements. I wish the same for you. Hang in there.
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Old 01-21-2011, 09:53 PM   #3
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I am sorry to hear about your diagnosis.

You sound like you have a lot of educated family members. That is wonderful. I agree that I would wait to tell my parents if I was in your situation.

I will be thinking of you and keeping you in my prayers.
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Old 01-22-2011, 01:26 AM   #4
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Old 01-22-2011, 05:25 AM   #5
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I'm sorry you have to go through this. I really don't know much at all about MS but your story/post was very interesting to a layman. Please feel free to come back to this thread and post as we here have all been through some sort of medical challenge. You sound like you have a great attitude and, you're correct, medicine has come a long way so I hope this works in your favor in dealing with this disease. Hang in there!
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Old 01-22-2011, 05:08 PM   #6
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Thanks everyone for your kind words.

I'm not feeling lucky right now but I guess there is some luck in living in a area that is known for such great medical facilities.

My 19 year old daughter was diagnosed with Juvenile Arthritis at 3 and we thanked God many times that we had access to some of the best doctors in the world. Now it's my time to take advantage of that.

Thanks again.
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Old 01-22-2011, 07:50 PM   #7
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My husband was diagnosed with MS, black Friday 2009. I have to say, stay active, exercise and keep a positive attitude. We do not talk about it unless he wants to discuss (I worry but keep to myself as he will react negatively to me asking questions all the time). He just joined an expermental project where he is either taking an MS drug or the auto-immune drug they give to organ transplant patients. We are not aware of which one and either is the neurologist. THe great part of this is that the manufacturer picks up the tab and he gets MRI's more often as they track the lesions. He is the only male in PA on the program as of right now, 400 world wide and they are looking to get over 1000. Apparantly, you need to meet certain criteria to be accepted (not sure what it is). I feel this is a great thing because...the results may help someone in the future and the extra care is monitored closely. Due to the extra MRI's etc, we are aware of what is happening with him. Doctor will pull him for program if he had negative results.

He did start with Copaxone however; developed another lesion so, they pulled him off. He did not have any side effects with the drug. When he was diagnosed he responded to the high dose steroids which is a great thing.

We have not had any issues since the original spell.....medicine has come so far with treatment. THere are so many options that are available. Our neurologist, who is a MS specialist, speaks of amazing mobility rates within the patients.

You will be fine!!! I know it is scary...you and your wife will get through it..together. One big piece of advice I will give you is don't forget your wife is affected by this also. My husband really changed, personality wise, with the original diagnosis. After finally having a long heart to heart, he was convinced that we would leave him and also was diagnosed with depression (which is quite common according to doctor). I needed to remind him....in sickness and in health...till death do us part!

We also worried about the effect on our kids. We were told to give them vitamin D supplements as they believe this is one of the causes. Also, my husband grew up in a high MS area. The area's are tracked and they try to determine why? After research, 4 people who went to school with him were also diagnosed. THis is within a 3 block range of his parents home. Doctor explained that it is something similar to.....your in 1st grade on the playground. Many kids have colds, wiping nose with hand and it transfers to equiptment. 9 of the kids fight the virus, the 10th doesn't. It lies dormant for many years (described as a screw being put in a coffee can....shake it for 30 years and it will eventually escape)...thus the symptoms. My DH had tons of lesions, no symptoms until the back/leg started hurting 6 days prior to diagnosis.

Keep your chin up and if you want someone to talk to, PM me.....my husband would welcome speaking to someone who understands what he feels.
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Old 01-22-2011, 07:54 PM   #8
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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.
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Old 02-22-2011, 08:22 PM   #9
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Quote:
Originally Posted by quentina View Post
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
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Old 02-22-2011, 08:26 PM   #10
quentina
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Quote:
Originally Posted by ccbayly View Post
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.
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Old 02-23-2011, 09:05 AM   #11
ccbayly
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Quote:
Originally Posted by quentina View Post
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
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Old 02-23-2011, 07:21 PM   #12
quentina
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Quote:
Originally Posted by ccbayly View Post
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
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Old 02-23-2011, 05:44 PM   #13
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Quote:
Originally Posted by cman View Post
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.
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Old 02-26-2011, 09:12 PM   #14
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Quote:
Originally Posted by DisneyFairytale View Post
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.
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Old 04-01-2011, 07:44 PM   #15
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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.
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