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Posted: Tue Dec 08, 2009 1:58 pm
by Wendigo
JenniferF wrote:Oh man. That's a lot to deal with.

Keep us updated.

Jen.
Jen, you'd mentioned Alanon and I did attend a couple of meetings. What to do with an alcoholic even my own son was not hard. I refused to deal with it, that's all. That son was raised by his dad, pretty much wrecked, became an alcoholic and came to me homeless. Other things are hard for me to deal with but requiring him to be sober as a condition of staying in my home was a no brainer and when he fell after two years of sobriety, he broke the agreement. There is nothing I can or should do to help him until he sees one drink as the equivalent of putting a gun to his head. He's locked up now for a while from crimes mixed up with his father from over two years ago. Alcoholism in itself becomes a tornado of problems that threaten to suck everyone into it if they allow it to happen. The whole thing was a heart breaker but a stress I had to get away from me and did.

The end of life issues with my dad will eventually end. Thank God my brother is strong, healthy and we have always been close.

My oldest daughter is making her own life and choices and has to accept responsibility for them.

My 21-year-old son has just tied an anvil to his neck for the next 18 years making a baby (or so the girl says) now. This son has been my biggest help and that will be changing.

Posted: Tue Dec 08, 2009 5:33 pm
by Bubba
Well, I am 6'2" and 280lbs on the hoof :lol: and I take 1mg at bedtime. I started out with .5mg and it didnt do the job.

Now, that being said, I know a woman who takes 2mg bars 3x a day and functions normal. 8O

Posted: Tue Dec 08, 2009 6:44 pm
by Wendigo
Bubba wrote:Well, I am 6'2" and 280lbs on the hoof :lol: and I take 1mg at bedtime. I started out with .5mg and it didnt do the job.

Now, that being said, I know a woman who takes 2mg bars 3x a day and functions normal. 8O
Wow, two of me wouldn't equal one of you, Bubba. Xanax I was told is short acting but you don't have problems staying asleep, just getting there. Both Xanax given for anxiety and temazepam (Restoril) given for sleep only work for about 4-5 hours. I get bizarre dreams on either drug. Maybe a different type of drug is needed to promote more hours of sleep, probably more dangerous though.

Posted: Tue Dec 08, 2009 8:04 pm
by Lyon
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Posted: Tue Dec 08, 2009 8:27 pm
by Wendigo
me_x_5 wrote:I also suffer from anxiety, I was put on busiprone,which takes it away,I also do not want to be on any of the other pills I get to droggy and I have little ones at home that need my full attention.L@@k maybe its time to believe your not going anywhere that your gonna be fine in spite of everything,I do not allow my brain to get of track I just keep reminding myself there is a plan for me and I get on with my day!!You have to believe that your cup is half full!
Normally I feel like I'm drunk so anything that sedates amplifies that. You probably have to drive little ones around - I find the MS itself has slowed my reaction time so necessary in driving as well as the ability to just take in and process many things being thrown at me at once and having to decide quickly. It's that inner "it's going to be ok" that gets really hard to find when all is caving in, even for someone who didn't have MS. It is so easy to get over focused on one's body with this disease.

Posted: Wed Dec 09, 2009 11:41 am
by Wendigo
I'd typed the term a gazillion times in my former career but never really knew what it meant - if what I have isn't a gallbladder problem, it is gastroparesis, usually associated with diabetes from damage to the vagus nerve but also in some MS patients. I just hope it's not recommended removing my gallbladder to see if that "works" and if not it can be assumed to be the other. I'm sure going to pick the brain of the ultrasound tech in about an hour. It figures, I am not supposed to eat 6 hours before the procedure and now I'm starving.

Posted: Wed Dec 09, 2009 12:36 pm
by jimmylegs
hi wen, hope you can get some bloodwork done before considering surgical alternatives... stress is really hard on your nutritional status, which in turn makes it harder for you to manage life stresses ... it's a bad catch 22 situation!

Posted: Wed Dec 09, 2009 1:28 pm
by Wendigo
jimmylegs wrote:hi wen, hope you can get some bloodwork done before considering surgical alternatives... stress is really hard on your nutritional status, which in turn makes it harder for you to manage life stresses ... it's a bad catch 22 situation!
Well, there were a few stones seen but no inflammation or obstruction, bile ducts look normal, no signs of cholecystitis, liver, kidneys and spleen appeared unremarkable. This of course is pending the official radiologist's reading. I may treat this a bit as gastroparesis myself - Reglan 30 minutes before eating. Erythromycin also promotes gastric motility, strange. There are TENS units also - maybe stimulates stomach muscles. I guess in extreme cases jejunostomy going right into the small intestine is done and/or parenteral nutrition.

The pain starts many, many hours after eating. Biliary colic would tend to happen soon after eating, especially something high in fat.

Posted: Fri Dec 11, 2009 5:04 am
by Wendigo
Putting things in priority, the stomach pain episodes are first. Mothers reading this can relate - labor pains at their worst only occur once a minute. I've borne six children and the stomach "contraction" is equal in severity to uterine contractions but there is no break for hours. The "relief" from throwing up is the same kind of "relief" obtained by pushing the baby out - it still hurts but at least you feel like you're finally getting somewhere. I had epidural anesthesia with my last delivery and done at a different level believe that would be one way to relieve the pain of a stomach pain attack.

I can't just get Reglan over the counter like I thought. My regular doctor had told me Tuesday to try Prilosec, which I am doing even though it seems illogical. I shared my idea on the gastroparesis yesterday and the Prilosec will be given a one week trial and then switched to Reglan if no improvement. I don't have heartburn. He's still waiting for the official read on the gallbladder ultrasound.

I know MS can slow the digestive system and this has been true for me going on two years next month. I've lost a lot of weight from not being able to eat much at a time, unable to tolerate feeling full. The slow down has shifted to a threat to my life from malnutrition. Looking at it as a long term symptom that has progressed over the last six weeks or so would seem to suggest it is not an "attack" requiring IV steroids but progression. I should probably tell my neurologist and let him decide that issue.

There is lots of information on the internet on gastroparesis diets and ways to try to get nutrition from easier to digest foods. I'm thankful now for the information that can help me eat SOMETHING so I won't waste away but it looks pretty boring long term if this is a permanent issue. I used to eat pretty much whatever I wanted but just in small amounts.

Posted: Fri Dec 11, 2009 5:21 am
by jimmylegs
sounds really bad wen :(
well if you ever get a chance to look into any nutrient levels, let me know. could point out some avenues for action if you try it some day.
good luck!

Posted: Fri Dec 11, 2009 5:58 am
by Wendigo
jimmylegs wrote:sounds really bad wen :(
well if you ever get a chance to look into any nutrient levels, let me know. could point out some avenues for action if you try it some day.
good luck!
It would be great if you could tell me which vitamins are most likely to cause stomach upset and whether they are available in a liquid form, a way to take them maybe diluted and a little at a time mixed with another type of drink. It's ideal to get the vitamins from food but it's a given that it's not possible, at least for now. I think I read that it's the small intestines that absorb nutrients so it's an unknown whether mine are working right or not. It seems much more common from reading on this board to have lower GI dysfunction like in constipation but mine seems to be just upper GI.

Posted: Sat Dec 12, 2009 9:30 am
by jimmylegs
okay well if we're talking gastric motility problems that would cause the nausea all right, so let's just look (again) at some suspect nutrients in impaired gastric motility...

potassium deficiency affects gastric motility but the old study included here is apparently mostly about rats and dogs.. but still. it's something to look into. frequent vomiting increases the likelihood of potassium deficiency. you could ask for tests of sodium and potassium levels - balance might be right off the mark.

if your potassium is down and you can't get it to come up, look into magnesium. magnesium, along with calcium, is involved in proper muscle function and you probably won't be able to correct potassium issues without at least working on your mag status. there is a useful minimum level known for magnesium...it's 0.91 but i forget the units - you can find them in the ortho biochem regimen thread..

gastric motility issues may also be connected to thyroid disfunction.
http://jcem.endojournals.org/cgi/conten ... act/1/1/24
how are your TSH, T3 and T4 levels looking? if they are not optimal there are other nutrients to look at to address thyroid problems.
zinc and thyroid http://www.ajcn.org/cgi/content/abstract/33/8/1767
thyroid issues can in turn have an impact on your vitamin d3 status, which is important to maintain at optimal levels (at least 100nmol/L) in ms.

the following is a very old and hard to read abstract linking impaired gastric motility (again in dogs :?) to b-vitamin deficiency. it would be very useful to look at your b vitamin status, for as many elements of that complex as you can.

so basically, everything i said before! plus sodium just to check the Na:K ratio.
if you can ask your doc to do some bloodwork, i'd say ask for zinc, d3, magnesium, potassium, b1, b6, and b12. all have links to one or more of ms, anxiety, nausea, digestion..
also you might want to look into your stomach acid levels..
http://arjournals.annualreviews.org/doi ... 189.001415
you can buy supplements to help augment stomach acid . i take betaine hydrochloric not with every meal and not every day, but here and there. can't tell what it's doing but just to be on the safe side..

HTH,
JL

Posted: Sat Dec 12, 2009 3:52 pm
by Wendigo
I'm not sure if a stomach acid supplement is necessary. If there was a deficit, Prilosec would make things worse, which is what my internist told me to take.

Figuring out my vitamin status with labs is more important than ever. Right now I'd swear I'm having an attack but it's impossible to tell what is just weakness and fatigue due to poor nutrition. My head feels like it weighs 500 pounds and it takes effort to sit upright unsupported.

I have been able to eat chicken soup and bought a six pack of the drink "Boost." I made the mistake of eating some candy and started shaking coming down from it, scary.

Posted: Sat Dec 12, 2009 4:57 pm
by jimmylegs
re stomach acid supplementing, it's just something to think about down the road i guess, and not right now while you can't keep things down. if you're on prilosec for acid reflux, then getting the sphincter functioning sounds like the first order of business, and then you can worry about whether you are able to absorb nutrients adequately..
hope you can get some of that nutrient info looked into ASAP.

i know you can get liquid vitamin d3, that's how i take mine, one drop in a spoonful of yoghurt, once a week.

also you can get powdered magnesium citrate that you can make into a nice hot drink.

you can get sublingual vitamin b12 strips, and there's this company genestra that has a decent liquid b-complex product. i know nothing about the store at the following link, it was just the first google hit when i searched for genestra liquid b complex: http://www.rockwellnutrition.com/liquid ... estra.html
there are some nice customer testimonials there.

if you could get some quality fruit smoothies down, that would help with potassium (although with us needing such high amounts daily it's hard.. i have 900ml of smoothie in the fridge and it's only 10% of the daily potassium requirement - i have 600mg pills to try to help)

i have never bought a liquid zinc supplement to my recollection, but i just googled it and sure enough they are available. i don't know anything about this company and how its products stack up against others but it's just a link i found: http://www.herbalremedies.com/zinc.html

do you think your docs will go for the idea of nutrient testing wen?
JL

Posted: Mon Dec 14, 2009 6:31 pm
by Wendigo
I've been doing good on the chicken soup and Boost diet. I had some angel food cake today, 0 fat, no effect so far. I had eaten nothing for two days at all and that is a sure way for all systems including mentally to deteriorate. Jimmylegs, my two doctors are so busy I'm not sure they will get into labs for vitamin status, even my neurologist, who is semi retired. I will quiz him about vitamins in general and get a feel for how important an issue it is to him Wednesday. Kind of strange, nothing has come out the other end in a few days, unusual for me, but it has just been the soup and it's all hopefully absorbed.

Number 1 on my Christmas list is to be able to eat a hamburger. I think I understand the relationship anorexics have with food - it's all around me and I get so hungry but can't eat it but for different reasons.