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Old 01-30-2011, 02:01 AM   #16
quasar4legs
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Cman, I am so sorry to hear of this terrible diagnosis.

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

Take care
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Old 01-30-2011, 12:50 PM   #17
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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.
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Old 01-30-2011, 03:11 PM   #18
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Hi Asoko,

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

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

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Old 01-30-2011, 04:53 PM   #19
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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 ), 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.
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Old 02-05-2011, 09:25 AM   #20
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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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Old 02-06-2011, 10:07 PM   #21
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Hi cman,

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


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Old 02-07-2011, 09:29 PM   #22
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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.
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Old 02-07-2011, 10:13 PM   #23
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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.
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Old 02-17-2011, 09:40 PM   #24
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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

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Old 02-18-2011, 08:05 PM   #25
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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.
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Old 02-18-2011, 09:04 PM   #26
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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
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Old 02-18-2011, 10:06 PM   #27
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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
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Old 02-22-2011, 08:22 PM   #28
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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   #29
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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   #30
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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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