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

Postby robbie » Mon May 16, 2011 3:54 pm

dedicated forum for when we feel dark.

maybe this is it
Had ms for over 19 years now.
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Postby munchkin » Tue May 17, 2011 6:24 am

You could be right.

If or when you are feeling really dark please come back here.
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Postby robbie » Sun May 22, 2011 11:22 am

(cancer survivors)can we all be MS survivors eventhough it dosen't kill you i guess just living with this sit makes us survivors
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Postby maynaka » Sun May 22, 2011 12:47 pm

Amen.
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Postby munchkin » Mon May 23, 2011 6:38 am

Yes, I also think we can be survivors. Actually, we are already survivors and just don't recognize it based on a traditional definition/idea.

There is so much happening with research right now and there are some very new ideas that might change things with MS. What they believed in the past about disability might be as outdated as the issue with ulcers.

IMO part of surviving is dealing with the ugly stuff that comes with this disease. Knowing that we can draw lines in the sand but that line can move when/where we want. For me, recognizing that I needed to mentally have that line was a huge relief. Knowing that it was my choice to move the line if I wanted was more of a relief.
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Postby robbie » Mon May 23, 2011 11:04 am

so much happening with research right now

that has always been the case it's not going anywhere

I needed to mentally have that line was a huge relief. Knowing that it was my choice to move the line if I wanted was more of a relief.

that is a good way to look at it
Had ms for over 19 years now.
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Postby robbie » Tue May 24, 2011 8:00 am

i did really well for the first 10 years or so hardly new i had it
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Postby robbie » Tue May 24, 2011 8:20 am

have you wondered why all treatments from bee stings to chemo seem to work great for some and not at all for others do you think there will ever be something that works for everyone?
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Postby munchkin » Wed May 25, 2011 4:47 pm

I have had my hopes on CCSVI, it makes sense to me. My husband works with hydraulic systems and when things slow down in one area it affects another.

There might be something to MS being more than one actual disease, even the neuro's have commented about that possibility.

How many types of treatments have you tried?
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Postby munchkin » Wed May 25, 2011 5:00 pm

I think I was ill for about 10 years before being diagnosed and then the neuro thought it would be a mild case. From that point on it was a fairly slow but steady decline. It's been 6 years since diagnosis; my walking is now severely affected, my hands have been semi-numb and immobile (at their discretion) for a number of years now.

I don't really understand why or when the progression stops, my thoughts were that the neuro's should understand some of this by now. It makes me very angry.
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Postby maynaka » Thu May 26, 2011 8:11 am

Robbie, where you on anything during those 10 years?

Munchkin, my decline was similar to yours, very slow and steady. When I was diagnosed in 84 it was as "probable ms". Although I'm not sure why because I had a spinal tap, MRI and that eye test (forgot what it's called). Since my only symptom went away (tightness in torso), I didn't really do anything until 98 when my legs starting getting stiff.

Good question about it being more than disease. Maybe that would help explain why some treatments work on some and not others. If that were the case, what if some treatments actually did more harm then good?

Gosh, that would explain a lot! Then if you add in factors like diet, the environment, etc., it's overwhelming to think about.

I've think I've tried everything but CCSVI.

I'm curious as to what you and Robbie tried and what your results were.

M
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Postby munchkin » Fri May 27, 2011 6:08 am

My neuro had me on Betaseron (what horrible reactions) for about 3 months and then Copaxon (again some pretty bad reactions) for another 3 months and after that nothing. The drugs were prescribed when I was first diagnosed.

I had a new MRI done in Feb - first one since 2005 and nothing much had changed. The neuro said he didn't know why I was getting worse and to come back for a visit in a year. Just a bit of a waste of time.

So after that appointment I had the CCSVI procedure and wow what a change. But my veins started to narrow (damage was done from the ballooning) again after 2 to 3 weeks and now at the 3 month mark I am pretty much where I was prior to the procedure. After having the procedure I really do believe that there is something to the theory.

At this point that is all I have done, I am thinking about the inclined bed. It has helped some people and I think the idea behind it is to help drain the brain so to speak. Depending on what I can find out in Canada from a local IR I might consider having my neck done again- this will take some time to make that decision.

I am also doing vein health supplements, I started this after the first jugular collapsed. Figured I better not make it worse than it was. I have no idea whether the supplements have made any difference.

What have you done/tried and did anything seem to make a difference?
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Postby robbie » Fri May 27, 2011 6:49 am

i took beta-interferon for 8 years was slowly getting worse the whole time with easy things to handle, pins and needles, ON, slight gait problems, bad coordination then i switched to spms and stopped the interferon went a few years getting the house set up for what was comming stair glide, wheelchair accesaible shower, bigger doors glad i did all that since i've been on this site tried LDN and antibiotics things aren't so easy to deal with anymore.
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Postby maynaka » Fri May 27, 2011 9:31 am

Let me begin by saying I really am not a stupid person, but as I started to think about the history and timing of what I've done...let's just say I'm sitting here shaking my head.

In 84 after my diagnosis I didn't go back to the neuro that gave the MS diagnosis. He gave me the diagnosis over the phone and said call him if I had any questions. The internet wasn't like today and the libraries didn't have much. Since my torso tightness was gone and felt fine I pretty much stuck my head in the sand when it came to ms.

Over the next 15 or so years I exercised a lot, but had a pretty crappy diet (pizza, cheese dogs, gyros, ethnic foods, etc). Remember, I live in one of the greatest cities in the country!

99 - I first started with bee stings on my spine. I did this for a little over a year. At this time my legs were starting to feel stiff and the stings actually produced tingling sensations down my legs. No other side effects other than a sore spine for about an hour or so after.

00 - Went to my first neuro. He put me on Betaseron. I was on it about 1.5 years. I was really tired of the every other day and felt I was slowly progressing so switched to Avonex. After about 1.5 on that I stopped.

2004 - By this time my walking was really bad and I was tired of my first neuro and switched. Within a week I was in the hospital getting chemo/steroid treatments. They consisted of six treatments, each with three days in the hospital getting chemo and steroids. They did seem to give me more strength and did help. But I continued to progress.

2007 - Tysabri for about a year. Some improvement initially, but slowly progressing.

2008 - Antibiotics for 1.5 years. Some slight improvement, but lost that. (nothing like Robbie's!) Basically, my feet were warmer and less purple. Kinda of sad when less purple in your feet is an improvement.

2011 - Started the Wahls program of diet, stimulation and supplements. I've been on it for about 3 months. Some slight improvement in how I take my steps but no real change in distance walked, etc.

During this time I also tried LDN (no change) and Rebif (bad reaction). I also cleaned up my diet around 2004 or so, but really have with the Wahls program. Been on supplements for quite some time.

Unlike Robbie having the foresight to prepare, I was in denial and did not take early action.

That's my story, sorry for the length.
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Postby maynaka » Fri May 27, 2011 9:51 am

Gosh, you think I would've run out of things to say...

In hindsight my lifestyle didn't help my cause...from 96 to 03 I was in a very high stress job and then added to it with grad school. Oh, and during that same time my husband and I were heavily involved in our son's sports.

I realize most people have this type of schedule. My thought is just perhaps I could have been easier on my body. I loved every minute of what I did, but now wonder if I'm paying the price? Why ponder, it doesn't change things.

Thanks for listening.

M
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