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A forum to talk about the general challenges of daily life with MS.

Postby maynaka » Tue Jun 14, 2011 3:41 pm

If doctors didn't lobby for stomach shrinking surgery it probably wouldn't be covered. In this country, the AMA is quite powerful.

I think the majority of the obesity problem here (in the US) would be solved through better diet, self control and exercise.

Blaming fast food, the schools, etc is not putting the blame where it belongs...POOR PARENTING. When I was a kid, we played outside all day, junk food and fast food was a treat and no one blamed the government for the obesity problem. Actually, very few kids were overweight.

Insurance will pay for CRAB drugs that don't work but question CCSVI. If big pharma could patent it, I could almost guarantee it would be covered. If a patient suffering from an incurable disease is willing to undergo surgery for an opportunity for improvement, govt needs to get out of the way. Compare the cost of CCSVI to CRAB drugs? A no brainer!!

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Postby munchkin » Wed Jun 15, 2011 10:20 am

Some days I just want to scream. It is all so silly (not my word of choice originally).

M-I remember walking to school, playing outside until just after the street lights went on, and we got treats once a week on allowance day. What has happened to our countries? There was an article published about anti-depressants and how if the prescribed pill didn't work your dr needed to add another pill to the mix.

When my Grandmother was alive she said the best thing was to do something - anything. We have lost something in the last 30 years or so.
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Postby maynaka » Wed Jun 15, 2011 11:15 am

Munchkin,

I forgot about the streetlights! We had to be home by the time they came on too. We didn't have central air (raised in the city where there was 10 ft between buildings) so we could stay out as long as my mother was outside with us.

The only kid I knew who was on any kind of medication was my best friend getting allergy shots in the spring.

I can't speak for Canada, but so many people here just seem to look for the quick easy fix to a problem, be it pills, surgery or playing the blame game.

I don't know many grandmothers who didn't possess a lot of wisdom and common sense.
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Postby robbie » Mon Jun 20, 2011 5:32 am

going till the end of the summer it's not fair to my wife anymore she deserevs better and i am heading towards a home it's all going to work out for the best i need to find the strenth i have done well to make it this far suicide is not the easy way out anyone who says that hasen't been there i just want to go while i still have some dignity hope it's ok top post some more thoughts over the summer
Had ms for over 19 years now.
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Postby LokeRundt » Mon Jun 20, 2011 10:01 am

does your wife know of this desire of yours? What does she think of it?
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*profile pic drawn by my wife, Mira Arntzen*
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Postby robbie » Mon Jun 20, 2011 10:28 am

yes, she dosen't like it but realizes that i'll never be happy
Had ms for over 19 years now.
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Postby robbie » Mon Jun 20, 2011 11:40 am

i was thinking and i realize that this is not the place to share my thoughts about this who wants to hear (when we all have it)what ms can do to some not just physically but mentaly also. there are many many worse off than me that handle this so much better but i am not good at being this way. have been on this site a long time so thanks for listening
Had ms for over 19 years now.
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Postby Nola » Mon Jun 20, 2011 1:00 pm

then where is the place to share? there are many ms issues that are embraced and discussed, but others that are met with a thud. so if you are one of the people who experiences these issues and thoughts, where do you go?

please keep expressing yourself, if you want to, that is, if it helps at all.
</div><div>Every moment of light and dark is a miracle. -- Walt Whitman</div><div>
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Postby maynaka » Mon Jun 20, 2011 1:29 pm

Robbie,

Although we pm'd I wanted to post the following because I'm sure others feel the same.

No one could say they know what you're feeling. But, in all honesty, this audience can relate better than most. We are either where you are now, are close behind or have passed you on the scale.

This is the place to express your thoughts and feelings. This is a community of people who learn from each other, lean on each, laugh, cry and scream at each other.

We are joined together by this hideous disease, but we are here by choice. We are a family, but we are also nonjudgmental friends.

If it provides any comfort at all, please let us be there for you.

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Postby robbie » Tue Jun 21, 2011 8:56 am

if ms just meant you would only be confined to a wheelchair i could handle it but it's much more. the way it makes you feel, the no core strenth the tightness in your chest, not enough breath to complete a sentence , falling forward when your trying to sit straight,the constipation, bladder problems,not being able to get comfortable no matter how you position yourself,the spasticity,the purple aching feet, the numbness, the list goes on every night now when i fall asleep i hope i don't wake up that would be the best way.
Had ms for over 19 years now.
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Postby munchkin » Wed Jun 22, 2011 3:48 pm

Post here no matter what your feelings are. There are many of us here that can relate to your feelings. Not all of us are at the stage to consider end of life decisions but we can be a place to let the feelings out.

Some of these thoughts and plans are so hard to discuss with the people we know and are close with. You are lucky that you and your wife can talk about this no matter how uncomfortable the discussion.

We are here to help in anyway we can, even if you just need to express your thoughts.
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Postby robbie » Sat Jun 25, 2011 6:57 am

this is me during the antibiotic treatment now i am back to hardly able to move. Been SPMS for 6 years or so have just been able to transfer from my chair for years. I take antbiotics and i can climb the fucking stairs.
Please help me understand this
http://www.youtube.com/watch?v=XD4pHxqpfHE
http://www.youtube.com/watch?v=BYvhsWFPdBk
It's no wonder i was so excited about antibiotics i really thought i was on to something and now i'm back or worse than i was before. How can taking them cause this even if only for a short time, It dosen't make any sense.
Had ms for over 19 years now.
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Postby maynaka » Sat Jun 25, 2011 8:49 am

Robbie,

I watched your videos again. That was amazing progress in a short period of time.

I'm sure you've asked and answered these questions in your mind...did you change anything in the protocol? Meds, supplements, diet?

The abx was obviously doing something. Were the scripts from your neuro or a GP? Did they offer any insight into the reversal of the progress?

Would you consider trying them again?

Robbie, I was on them for 1.5 years and my improvements were almost non existent. Your changes shows it did do something, the question is what stopped and reversed the progress?

Maybe Sarah could offer some insight.

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Postby munchkin » Sat Jun 25, 2011 10:42 am

Robbie,

Wow, the videos are amazing.

I agree with Maynaka, did anything change? Did you have to go off the antibiotics? Did your Dr see the positive changes and what did they say about the deterioration? Can you go back on the drugs?

I'm sorry if the questions seem old and tired. This is the first I have really heard or seen of antibiotics for treatment.
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Postby robbie » Sat Jun 25, 2011 2:06 pm

i kept everything the same but started going down hill i am still taking some but not nearly as much as before
Had ms for over 19 years now.
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