Getting better too quickly... is it a bad thing?

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Postby Loobie » Sat Dec 29, 2007 12:59 pm

Jim P,

Do you know which of the fun bladder "thingies" you have? There seem to be three main ones: Over Active Bladder (OAB), flaccid bladder, and detrussor-sphincter dissynergy. The treatments for each are not the same and the bladder issues simply aren't summed up as "MS bladder". The OAB makes you go all the time, even when there is hardly anything in your bladder. The flaccid bladder is where you just keep filling and not voiding at the same rate, and the dissynergy (what I have) is where my bladder will be full and telling me to pee, but my urethral sphincter doesn't work in concert with the bladder muscle (detrussor muscle). This makes it so that when I feel the need to pee, I'd better do it with in a VERY short period of time or I pee wherever since it's always fairly full. The problem is that you only get rid of about 4-5 oz. and thus have to go frequently to empty. It takes me like 6 pees to get empty (about 2 hours).

Knowing which condition you have can help I'm sure since I think with flaccid bladder there is a decent amount of self cathing required to manage and make sure your bladder doesn't get stretched until it's useless. They treat OAB with anticholinergics (Ditropan, Detrol and others). But unless you love 24 hour cottonmouth, losing the ability to sweat and an increase in constipation, then they are not fun. However, if you were having accidents all the time due to OAB then I'd imagine those symptoms would have to be dealt with. They are used all the time so I'm sure there are ways to manage the side FX.

I don't know about you, but my bladder has been my most life-altering issue. In the morning when I'm really full, I can't be a minute from a bathroom; I lterally go about times an hour until about 11am or noon. After I get the night's pee cleaned out it settles down, but life doesn't start after noon, so pads it is! That was an adjustment, but it was better than having silver dollar sized wetspots on my pants all day long.

Even though I've been windier than a bag of assholes in this post, what I am getting at is if you don't know the right type of bladder dysfunction you are having, you should find out. From how you describe it I wouldn't be able to even guess, but once they found out I didn't have OAB it was good to get off the cottonmouth drugs. I get that enough in the evenings :wink: .
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Postby Jim_P » Sat Dec 29, 2007 4:41 pm

Had the cystoscopy, the urologist did not know what to tell me about it.

He filled my bladder up with water and told me to tell him when I thought I couldn't take anymore. He kept filling until I couldn't take anymore and he looked puzzled. He kept saying, "are you sure, are you sure?"

He also told me to push it out through the catheter lying on my freaking back. I tried and I apsolutely knew I couldn't do it...... I have NEVER been that full of water before, as well. I went and squated in the bathroom and peed out at least over a quart in a plastic dish.

Anyway, he had apsolutely NO name for my bladder problem.

All I know is it sounds a lot like what you have. I'm afrad that it may become a flacid bladder one day.... in which case I will need to self-catheterize.

I have an advantage.... I squat in my bathtub. You should try it sometime, it really helps empty more out..... Even that doesn't work sometimes....

Now, a bowel movement will push my bladder completely empty. For this, I thank God.

I also have to use soppositories unless my bowels are extremely full.

I use them all the time, because every time I really want to empty my bladder, a little turd will do the trick.... So instead of a catheter, I stick a soppository up my arse

Anyway, that's all I know about my bladder at the moment.
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Postby robbie » Sat Dec 29, 2007 5:51 pm

I have an advantage.... I squat in my bathtub. You should try it sometime, it really helps empty more out..... Even that doesn't work sometimes....

Why don't you just sit on the toilet?
Had ms for over 19 years now.
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Postby Jim_P » Sun Dec 30, 2007 10:34 am

Unfortunately it's not that simple. Doesn't work unless I'm doin' a #2. Squating is the only other way I can force it out.

Don't you think I've tried everything at this point?
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Postby Chris55 » Wed Jan 02, 2008 7:37 am

MVISCONTE--GREAT POST! You hit so many nails on the head. ESPECIALLY the part about no one really knowing what MS is yet. My very reason for believing different things will work differently for all MSers.

Again, thanks--Chris
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Postby CureOrBust » Thu Jan 03, 2008 4:19 am

Jim_P wrote:... two table spoons a day (morning and night). I have had no ill side effects, except for the marijuana like anxiety for the first hour after consuming.
I have ordered and received a pack of NAG, which is in capsule form. Do you know what your "two table spoons" would equate to mg by any chance? The tablets I have are 750mg each. A true "table spoon" measurement would probably equate to the contents of about 10 capsules.

You have also said that in about two days your symptoms abated like on IV Steroids. Was it better (ie improvements) than when on the steroids? or similar?
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Postby Jim_P » Thu Jan 03, 2008 8:47 pm

Sorry for the late reply. This powder form doesn't have mlg measurments, only grams. there are 60 grams of it in the jar. I'm not sure what a teaspoon is measured in grams.

I'm also not sure about the strength of either of these supplements we have.

I'd be very careful how many of those pills you take in one day.

What do the directions say on your box?
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Postby Jim_P » Thu Jan 03, 2008 8:50 pm

For me, it was very close as to the relief from steroids, but didn't have a ton of bad side effects with glucosamine.
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Postby Jim_P » Thu Jan 03, 2008 8:53 pm

ERR .... I said teaspoon, I meant tablespoon

And again, I am not measurement savvy, so I'm not sure about the conversion
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Postby Jim_P » Thu Jan 03, 2008 9:54 pm

I also meant to tell you that I got carried away with my glucosamine consumption one day... I took 4 tablespoons (obsessive compulsive me), and I got a bad feeling from it.

It felt like my blood was boiling, kind of like what I picture a hot flash feeling like.

It was not an MS symptom, but I had definately taken too much, and I could tell.

Just had to let you know.... The only analogy I can think of is when I took too many vitamins one day, I got a similar reaction.

Now, I learned a lesson. I'm back to only two tablespoons a day.

I'm going to keep taking it until I cannot afford to buy anymore. I am determined. I've had initial good results, and I still feel good, but I haven't noticed anymore results since the first week.

It is because of the first week of goodness I will keep taking this.
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Dosing...

Postby mvisconte » Thu Jan 03, 2008 10:33 pm

CureOrBust wrote:I have ordered and received a pack of NAG, which is in capsule form. Do you know what your "two table spoons" would equate to mg by any chance? The tablets I have are 750mg each.


Based on the amount in the container that Jim has, he is taking 2 grams a day (60 gram jar that is supposed to last 30 days). If the contents are the same (vs fillers/binders/etc.) then 2 tablets are 1.5g, and three (3) tablets would be 2.25g. You could start w/ a pill in the morning, a pill at night, and if you wanted, you could do early morning, afternoon, night for 2.25g. I don't think that the diff'c between 2g and 2.25g is significant. I don't think that there is an LD50 for NAG, but it would probably be on the order of a boxcar load a day. ;-)

CureOrBust wrote:You have also said that in about two days your symptoms abated like on IV Steroids.


Lest you get disappointed if you don't follow suit totally, remember that everyone is different, every course of MS is different, and we all can respond to meds/nutrition differently. IOW, if it doesn't happen w/intwo days, don't give it up... last out the month (or bottle) before you decide what the outcome is.

I wish you luck, and I hope that we hear that you can sing and dance and play the piano after NAG, as well as getting younger, more good looking, and richer. Heh.
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Postby Loobie » Fri Jan 04, 2008 5:08 pm

Well I got mine today. I measured the "measure" that comes with it and it is a Teaspoon, not a Tablespoon. It says one of these a day on the jar, but I am going to go morning and night. It's about an hour after my first "dose" and I didn't get any anxiety feeling. I'll update in a week (unless I start feeling better, then I'll go apeshit) and let you all know if I feel anything.
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Postby Jim_P » Fri Jan 04, 2008 5:22 pm

Best of luck with it.

I know everyone's MS is different and everyone takes differently to various treatments and such, so I hope it makes you feel as good as it has me.

I can still wiggle my big toe and that is a very good sign. My peeing is still hesitant coming out, but not as bad as before the NAG.

The first few days of NAG I saw drastic changes, but it has leveled off, leaving me feeling better than in a long time. Still, I was hoping for even more recovery. I'll keep taking it though, until I run out of funds to pay for such things.

Solumedrol proved the same for me too, but that shit sent me into the pits of hell. Suicide even crossed my mind on steroids, and I never, ever think like that
Last edited by Jim_P on Fri Jan 04, 2008 5:29 pm, edited 1 time in total.
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Postby CureOrBust » Fri Jan 04, 2008 5:28 pm

Jim_P wrote:I'm also not sure about the strength of either of these supplements we have.
The "Strength" of the material in the capsule is not important, as it explicitly states that there is 750mg of N-Acetyl Glucosamine in each capsule.
Jim_P wrote:I'd be very careful how many of those pills you take in one day.
What do the directions say on your box?
The pack says 1-3 capsules / day. The first time I took the three capsules, and now I go up to 4 capsules, twice a day. I do not notice any mood alterations etc or even any other side effects.

mvisconte wrote:I wish you luck, and I hope that we hear that you can sing and dance and play the piano after NAG, as well as getting younger, more good looking, and richer.
Sing? that would be something different from before I had MS ;)
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Postby Loobie » Sat Jan 05, 2008 9:04 am

I'm going against what I said about posting in a week. Nothing major happened, but after I posted that I didn't get anxious, we left the house to go to some friends and I got REALLY anxious. Only for about a half an hour so it wasn't too bad. It was like drinking too much caffeine, I got real jittery and anxious. No resemblance to smoking pot like Jim_P had. If pot made me feel anxiety like that, I wouldn't smoke it! Anyway, nothing happened but I wanted to clarify that I DID feel anxiety temporarily.

One other thing which I probably shouldn't even bring up since it was only one night. I have been absolutely, unequivocally unable to sleep past 7am no matter what time I go to bed. Now I don't stay up until 3am ever anymore, so it's not like that ever happens and I manage to get 5-6 hours of sleep per night while getting up maybe three times a night to pee. Last night I went to bed at midnight. I woke up at 4 am and peed. After I laid back down, I slept until 10am. That was weird and a true phenomenon for me. Like I said, there are no exceptions that I can think of where I have slept that long continuously. Maybe all conditions were right and it just happened.

Who knows? I plan on finishing my tub of powder and evaluating at that time, but I sure could use about a week of sleep like that!
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