Not trying to bother anyone

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Not trying to bother anyone

Postby chrishasms » Tue Jan 08, 2013 1:52 pm

I no longer post here anymore but I still read the posts. After my post expressing frustration about my neurologist staff and the disease itself, it was a printed topic in my appointment emailed to him I decided this forum was no longer a place someone can express true frustration unless it's about how whoever can't get into surgery to get veins opened up. Oh let's mention this Site should me called http://www.thisisCCSVI.com.

Now for the record, I love my neuro, I wouldn't change him for anything. Before anyone feels the need to send this to him... Screw you guys whoever did it. I can point out numerous posts where people have exercised their right to express frustration with their doctors, none of whom were tattled on.

That being said I now deal with my issues via a therapist, my neurologist support team, and my general doctor. I don't come on here anymore except to read. I really have no idea who I'm talking too. This is my first post in - who knows?

Again, this is not a complaint against my doctor, who is letting me do an expiramental treatment and it's working, this is a complaint against those who need to clean off the startchy, crusty dried booger sleeves from wiping their noses. Do not take out your issues on others because you have nothing better to do.

Again, just to make this really clear, I AM PERFECTLY HAPPY WITH THE 2 NEUROLOGICAL PEOPLE I SEE.

NOW, on the flip side.....

I'm expecting my first baby in April. Are there any men with MS at this forum who have experience with small children and could share any tricks of the trade? I am going to be a stay at home dad :-)

Again folks, because someone is pissed and uses the forum as a way to express frustration, you don't need to turn them in to their doctors. Twits.
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Re: Not trying to bother anyone

Postby LR1234 » Tue Jan 08, 2013 6:21 pm

So good to hear from you Chris and congratulations on the wonderful news of going to become a dad!
How is your ms these days? Is the experimental treatment you are mentioned at tims? I am always interested in what's working or not for people
X
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Re: Not trying to bother anyone

Postby lyndacarol » Tue Jan 08, 2013 7:44 pm

I am also glad to hear from you again, Chris; and CONGRATULATIONS on becoming a dad in just a few months!

I am unaware of the situation with the TIMS posting and an e-mail to your neurologist that you described, but I am sorry it happened and drove you away. Please know that some of us are very glad to have you post here; at the very least, please continue to read here.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Not trying to bother anyone

Postby Loriyas » Tue Jan 08, 2013 8:31 pm

I am glad to hear from you too Chris. Congratulations on becoming a new dad! I don't post on here much any more. It's not the same. But just the same, glad to see you!
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Re: Not trying to bother anyone

Postby chrishasms » Tue Jan 08, 2013 8:42 pm

Well again, I have no issues with the docs I have. Sometimes you just need to blame people who have nothing to do with MS for it. I think of it like when I blame the wife for me cracking my leg into her dresser. She didn't make the dresser you know. Lolol.

For darn near 2 years I guess I have been on 3gr of Roids every 8 weeks. I'm thrilled. Except for HiCy it's the only thing that has somewhat worked. I have 0 issues.

I also use amphetamines, 20mg tabs, for fatigue when I have it. I don't use it like that though. I found a tolerance will build so I start with 1/4 tab at like, mmmm, 10 a.m. And that will get me through the day. After a couple of days it'll take a half pill, then 3/4, and 1. The rx is for two pills a day but I only have fatigue between 11 and 6. I'm also lucky since the chemo my fatigue is only a few days a month. My rx from December of 2011,for one month, was finished in December of 2012. Being awake, and falling asleep at night is nice.

Otherwise, I am doing great... Holy crap I'm going to be a Dad! Lolol!

What is new?
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Re: Not trying to bother anyone

Postby NHE » Wed Jan 09, 2013 12:46 am

chrishasms wrote:I'm expecting my first baby in April. Are there any men with MS at this forum who have experience with small children and could share any tricks of the trade? I am going to be a stay at home dad :-)


Congratulations!
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Re: Not trying to bother anyone

Postby CureOrBust » Wed Jan 09, 2013 12:48 am

Congrats on the kid!

chrishasms wrote:I also use amphetamines, 20mg tabs, for fatigue when I have it.
Can I ask what drug specifically you are using?
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Re: Not trying to bother anyone

Postby chrishasms » Wed Jan 09, 2013 1:04 pm

Tytytytytyty for the congrats!

It's amphetamine salts. I've also been on the adderal. I am a method addict from 99,so I am uber uber careful. The wife will tell me I'm getting pissy and then I quit, regardless of fatigue. Luckily enough I only get a couple of days a week of tiredness so it's not an issue.

Funny thing is, I am not ADHD but I sure do have a better train of thought on these things lol.
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Re: Not trying to bother anyone

Postby Cece » Wed Jan 09, 2013 1:47 pm

chrishasms wrote:I no longer post here anymore but I still read the posts. After my post expressing frustration about my neurologist staff and the disease itself, it was a printed topic in my appointment emailed to him I decided this forum was no longer a place someone can express true frustration unless it's about how whoever can't get into surgery to get veins opened up.

Seriously? Who does that?!

Congrats on the baby. What was tough for me was coping with the usual fatigue of having a newborn who is not sleeping the night, added to the MS fatigue. No advice really other than to go to sleep right away when the baby goes to sleep, and to avoid stimulants if they at all interfere with falling asleep.
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Re: Not trying to bother anyone

Postby chrishasms » Wed Jan 09, 2013 3:33 pm

Well, I guess it could be another way but in all honesty it made more drama than it was worth. I think I almost lost my doctor and it scared the hell out of me. I just want to have MS, take some meds as quietly as I can, have a kid, last as long as I possibly can, become a head on a pillow, and go to the heavenly host. I've tried things and even though they worked I'll never get to do it again unfortunately. It's just time to realize there is only so much that can be done now. I'm lucky to be able to be outside the box right now with my treatment. I think I'm as happy with everything as I can be. Knowing MS is a bitch and is uncurable is a bummer. Coming to terms with the fact it is YOU that has MS and there isn't anything is a real bi-atch bummer. I'm just trying to make my end game as tolerable as possible. I figure I've had MS probably since 8th grade, but 19 for sure. That means I'm thirty years into this. I've got the kid coming, it's all about quality of life for as long as possible, hopefully moving. The Lord decides and medical science.

I've already started screwing up my sleep schedule on purpose. The wife is peeing all the time so I have her bug me awake lol. I am also taking 20 minute naps in the day. Timed lol. I have been told my efforts and planning are commendable and chivalrous. They are however completely worthless because whatever I plan for James will decide to do the exact opposite lolol. I say bring it on son! I am probably owed by what I did to my dad!
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Re: Not trying to bother anyone

Postby Anonymoose » Wed Jan 09, 2013 4:07 pm

First of all, they are going to find a treatment for ms that works. Don't be such a Debbie downer!

Now for the important stuff. Get all the sleep you can now! You will not sleep for two years. You will be delirious from exhaustion. Now who's being a Debbie downer? Lol. When you change your son's diaper, cover the sprinkler or you will need to change your clothes a lot. Avoid impaling his belly on your shoulder when you burp him...or you will need to change your clothes a lot (my dh never mastered this skill). Hylands teething tablets are the bomb. When he gets super drooly and ornery, give him a couple. There are also hylands gas drops for those tummy ache crying jags...a lifesaver along with smooshing their bellies into yours and pumping their legs into their bellies while you sing a dumb song and make stupid faces. You should be practicing those now. Do not buy all of the plastic baby toys they sell. We did. He played with like one...once. Take the binks away at 10 mos and swap the bottles for sippies at 11 mos. Its much easier to do this when they are very young.

Take lots of pictures and videos because he will turn into an unrecognizable alien life form at the age of twelve. You will miss the baby the alien ate.

Congrats and enjoy the wild ride!
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Re: Not trying to bother anyone

Postby chrishasms » Wed Jan 09, 2013 4:50 pm

I'm not a Debbie Downer. I'm a reality Ralph lol.

Thanks for the advice. I've been told about the tubing and making sure to cover it lol.

This is a bit different than before. None of my posts have been deleted -yet- or a certain member yelling at me for everything I write.
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Re: Not trying to bother anyone

Postby Cece » Thu Jan 10, 2013 9:04 am

While the screwed-up sleep schedule is the norm, you could get a sleep baby. My firstborn started sleeping 9 - 10 hours a night at five weeks old. I was worried! The doctor okayed it because she was a large baby and healthy. So I ended up with a very abbreviated version of the newborn crazy nights and I was able to put her to bed, stay up for an hour, and still get eight hours of sleep.

My second baby was the complete opposite.

If you want to help with your sleep after the baby is born, start bringing your wife ice cream and take-out asap. Nine pound newborns seem to sleep better than five pound newborns. :)

As for certain members, I think he was banned.
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Re: Not trying to bother anyone

Postby chrishasms » Thu Jan 10, 2013 9:35 am

That certain member, the janitor with an attitude and an affinity for talking above his life stature, was one of the other reasons I left. My grandfather told me, "Chris, you can't argue with a fool, and you'll end up looking like a fool if you try. " I was looking like I had the world's worse case of stupid, so I quit arguing lol.

Our child has club feet. My wife had it, my wife's cousins have had it, and I had a twisted foot. This probably means the kid won't be running at 9 months like me. As long as he isn't loco en la cabesa I think I'll be ok. Oh, and I pray this child sleeps lol.
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Re: Not trying to bother anyone

Postby ssmme » Thu Jan 10, 2013 11:49 am

Congratulations Chris! It's good to hear your doing okay. Please be ready to post baby pics when the time comes. :-)
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