Just diagnosed with Multiple Sclerosis - Thanks for listening

Discussion in 'Coping and Compassion' started by cman, Jan 21, 2011.

  1. cman

    cman Mouseketeer

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    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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  3. CleoPahd

    CleoPahd Mouseketeer

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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. :hug: Hang in there.
     
  4. mommasita

    mommasita DIS VETERAN Moderator

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    :hug: 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.:grouphug:
     
  5. Pea-n-Me

    Pea-n-Me DIS Veteran

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  6. Christine

    Christine Would love to be able to sit on

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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!
     
  7. cman

    cman Mouseketeer

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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.
     
  8. quentina

    quentina <font color=deeppink>The bridge has been built and

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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.
     
  9. quentina

    quentina <font color=deeppink>The bridge has been built and

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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.
     
  10. DipsyDoodles

    DipsyDoodles Mouseketeer

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    You are absolutely correct about the facilities we have available to us here in Massachusetts. Best of luck to you neighbor (I live in Hopedale). You have a great attitude about your diagnosis.
     
  11. diz8297

    diz8297 <font color=teal>The only culture she knows is at

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    A neighbor here in RI who wants to offer her support as well! I have a friend with MS and walked in the MS walk for the first time last year. It is in April and this year we are getting a team of almost 40 people together from our church. We are mobilizing and are fighting this disease!! Stay strong! Post here for support and friends. :hug:
     
  12. cman

    cman Mouseketeer

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    Thanks everyone for your support and prayers.

    I have a appointment with the neurologist on Tuesday to talk about what, if any, treatment options I might have.

    Then comes telling my closest relatives and I dread telling my kids. They're only 18 and 19 and while they are young adults I fear that no matter what I tell them it will really bother them. I'm almost paralyzed by fear that one of them will get this crappy disease.

    In addition to my dad, my cousin (50) (dad's sister's son) and his daughter (19) have been diagnosed with MS in the last 4 years. My daughter (19 year old) was diagnosed with Juvenile Rheumatoid Arthritis when she was 3. JRA is also an autoimmune disease.

    Not complaining but..... enough is enough!
     
  13. mommasita

    mommasita DIS VETERAN Moderator

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    :hug: Try and make daily notes of what you want to ask and speak about. Sometimes our nerves, added to the stress of the situation get the best of us, or at least mine do. I come home :headache:, why did I not mention that or this?
    I have an appt Wed, and have a giant list. This time I am prepared.
    I can't imagine how you must feel in speaking with your kids. That is my greatest fear, that one or both get my gene pool, and all that comes with it. However, they were 10 and 13 with my first brain surgery, and very great. I had spoken after about pondering Not telling them. Just have them perhaps go on a nice trip with my father. They were both furious, and made me promise not to keep anything from them. All for one, and one for all. In no way am I trying to tell you what to you. I hope you know that.

    Good luck with your appointment. Let us know how you are doing.:grouphug:
     
  14. minniebeth

    minniebeth <font color=green>I count on y'all to keep me up t

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    :hug:I will keep you and your family in my thoughts and prayers. Praying for healing and strength for the challenges that you are and will cope with.
     
  15. asoko

    asoko Mouseketeer

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    I was diagnosed end of November and am on Copaxone. I have a family trip to Disneyworld planned for September. I feel like with my balance issues, I need to "train" for the trip. I've heard some people say to change diet, exercise etc to feel better. I was wondering if anyone has advice for being able to make it through the parks every day. After getting the diagnosis, I really need to go to the happiest place on Earth.

    Thanks
     
  16. cman

    cman Mouseketeer

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    asoko,

    Sorry to hear that you too have been diagnosed with MS. As I stated in my original post I was diagnosed a little over a week before our trip to WDW. Even though my head was still spinning I made sure to enjoy our time there.

    I can give you some advice for you trip. Not as a person with MS but as someone who as taken a lot of trips with a person who has MS - my dad.

    As I stated before I'll always have respect for Disney for all they've done to add joy to my families lives - especially my dad. Our trips their have been the best vacations of our lives.

    Our first big family trip to Disney was in 1998. At this time it was hard for my dad to get around and my parents were not going to come. I convinced them to just come and see what happened. 5 trips later I can say it might be the best thing that's happened to my dad. I can see that without the Disney trips my dad would have continued his downward progression without the occasional fun that comes with a Disney trip.

    Here's the advice I've learned from my dad.

    Go and have as much fun as you can. Do all you can and take as many breaks as you need to get through the day. Many days my dad would only spend the morning or afternoon with us and then head back to BWV (we're DVC members) to rest. This allowed him to spend at least some time with us each day.

    If you can, try to stay on Disney property since I think it gives you much more freedom to get around and not feel like you're affecting others in the group. For us the BWV is perfect since my dad can ride his scooter to Epcot or MGM by himself.

    Don't ever feel like you're inconveniencing anyone if you need to take a wheelchair or scooter on a bus. I know it takes a little time load and some people get aggravated by that. As I've said before, shame on them for resenting my dad for taking a few minutes of their time. Don't care what they think - they're not worth it.

    I don't know how old you are but hopefully more trips to Disney are in your future. If that's the case do only what you can do knowing you can do more on future trips. The last thing you want to do is come back and feel like you can't do it again because it was too tough on you. If we had run my dad ragged on that first trip he would not have gone back.

    I can't think of a better place on Earth you can go to that will accommodate you while still allowing you to have the time of your life.

    You will be in my prayers.
     
  17. quasar4legs

    quasar4legs DIS Veteran

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    Cman, I am so sorry to hear of this terrible diagnosis.:hug:

    I hope the neurologist is able to help you find some medication that halts the progression of your MS, treatments are improving all the time.

    My cousin who is 50 was diagnosed with relapse/remitting MS 10 years ago and has had no new lesions after starting Tysabri 2 and half years ago.

    The five other people that attend the MS clinic at the same time she has her treatment each month have all had very positive outcomes with Tysabri but any medical treatment is such a personal thing.

    Something else that my cousin has found helpful is to attend Pilates with a physical therapist and perhaps this service is offered by your MS society. My cousin has found that her core strength has improved she has found it easier to keep her balance when moving quickly. Might be something to consider at some point.

    If you have concerns for your children's wellbeing discuss this with your neurologist, they may be able to help with useful information.

    My cousins neurologist suggested that it would be worth having her children's Vitamin D levels tested but only to take a supplement if they were deficient. Too much Vitamin D can be toxic.

    I hope things go well with your appointment on Tuesday, I shall be thinking of you and your family:grouphug:

    Take care
    Quasar
     
  18. asoko

    asoko Mouseketeer

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    Cman

    Thank you for your kind words. I'm 41 and I think I've had it for a while. My doctor say my brain was probably compensating, and just couldn't anymore, so the systems got worse. My family (DH, DS (7) and DD(6) have been to Disney many times. I'm usually a planned commando making sure we do a lot and not miss anything. I think I am resolved that I can't do it like that anymore and we can still have a wonderful time.

    Thanks to you sharing your experience with your father, I think this trip will be more of a "stop and smell the roses" trip. I was hoping I could just walk, but now am thinking of renting something. I'm probably going to rent a scooter, DH doesn't have to push me the entire time. I am staying on property and have already requested a refrigerator for the medicine. I was thinking of taking midday breaks and it sounds like that helped your dad.

    I think I'll be ok as long as I don't get overheated. Last night I had a fever and per the Copaxone nurse a "false attack" (it sure felt real when I was crawling up my stairs LOL)

    Quasar, my husband is always on me about the corestrength. Thanks for mentioning that the Pilates helped your cousin with balance. I'm going to look into that.

    Once again, thank you. I'm not feeling so alone.
     
  19. quasar4legs

    quasar4legs DIS Veteran

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    Hi Asoko,

    I am sorry that you are also having to deal with this disease.:hug:

    The Pilates has been an interesting one for my cousin because she feels that as her core strength has improved she has had less falls.
    She does her session with the physical therapist each week and then does half an hour of 'homework' each morning and half an hour on her exercise bike each night.

    I actually do the Pilates session with my cousin as I have back and neck problems so it has become a fun girly morning with lots of laughs and we both look forward to our exercise session.

    The other advantage of working with a physical therapist is that they have worked with my cousin on not overcompensating with her 'good leg' so that she has a much more safer walking gait and is more upright.

    I shall keep you in my thoughts and am sending both you and cman an extra BIG Koala cuddle:grouphug:

    Quasar
     
  20. MeredithRX

    MeredithRX Mouseketeer

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    I am so sorry to hear of everyone's diagnoses! I was diagnosed with MS myself after a particularly nasty flare-up in May 2009. I had a 1 year old, 4 year old and 5 year old at the time and was completely overwhelmed! Looking back, I had been dealing with it for well over 5 years but had been getting a steady stream of incorrect answers from multiple doctors and then shipped off to the next doctor when they ran out of 'suggestions'. Honestly, as horrible as it was to hear 'You've got MS', FINALLY I knew what it was and could start to move on! I think the fear of the unknown was worse than the fear of the disease itself. Now I know what it is I'm up against.

    I've been on Copaxone as well as a few oral drugs for the spasticity that I deal with from time to time. I have good days and bad days but nothing like my initial flare yet.

    I'm really glad to hear that you live in a great medical area. That is something that I wish I had much more access to! I've greatly increased my exercise since my diagnosis, lost quite a bit of weight (on purpose :lmao: ), and have been seeing the chiropractor regularly. I was never a huge believer in chiropractic stuff, but it does help the tightness and so I keep going. I'm amazed with the strides that have been made in MS treatment in just the last few years. I think we're much better off than those diagnosed even 10 years ago. And, while I do worry about my children, I can only hope it doesn't affect them. If it does, maybe research will have come a long way by then.
     
  21. cman

    cman Mouseketeer

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    Thanks for all the comments.

    I started a 3-day infusion of Solu-Medrol last night so I'm hoping it has some affect but hasn't yet. I'm kind of in limbo right now because they know I have MS but haven't classified what type I have.

    From what I know most of the disease modifying drug are targeted towards the relapse remitting form of MS. My neuro thinks I might have the primary progressive form. It seems like most of the advances in drug therapy have targeted RRMS.

    So I'll wait and see what happens. It could be worse.....

    Asoko, do whatever it takes to enjoy your time down there. Not seeing everything justs gives you an excuse to go back!! My dad resisted the wheelchair/scooter on his first trip on 1998. I think if he hadn't given in he might never have gone back. He's been back 4 more times since then without even thinking about it.

    Quasar, thanks for the advice. Luckily I am someone that has been exercising 5 times a week for years and although I pay the price for doing so I will continue until I can't anymore. I will look into Pilates.

    MeredithRX,

    Sorry to hear about you initial problems about being in llimbo and having to deal with doctors like you have. I guess I'm "lucky" that the diagnosis came fairly quick. I also feel for you when it comes to having small children. My kids are 18 and 19 and can understand a bit better what I'm going through and are a great help. Hang in there
     

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