Julie (Sarahmsmom) Update - Good News!

[Sarahsmom46]

I am very happy today.  First off, we found out the culprit to what has kept me in the hospital the last couple weeks  and second, I just had a very nice chat with a neuro resident who was consulted about my case on my new diagnosis.  I wanted to share this with you guys as a learning experience about how a medical issue that seems totally unrelated to MS can actually be tied back to MS.  

As most of you know, I was readmitted to the hospital on 6 Nov for what seemed like an unresolving pancreatitis.  I had stomach pain whenever I tried to eat, severe nausea, and severe diarreah.  I was severely dehydrated as a result.  They treated it as pancreatitis and we noticed a pattern that whenever they had me on nothing by mouth, my symptoms improved.  When they reintroduced food, I got sick again.  I had so many tests I can't believe, but the one I had yesterday a gastric emptying test, which I swore was a waste of time, came back positive for gastroparesis.  I just got the news this morning.

The GI team decided to get a consult from the neuro team to see if they thought there was any connection between MS and gastroparesis.  I had a very nice discussion with the resident neuro who brought out an article on the connection. He is digging deeper to see if there is a treatment protoco i.e,. steroids.  I am not for steroids and he was ok with that unless the medication I will be starting, Reglin, does not work.  

So in a nutshell, our MS can be contributing to our gut issues and the sad thing is that a gastrointerologist may not even connect the two.  Something to think about.

Julie

[tingletingle]

Hi Julie,
Fabulous news. I am so happy for you and I'll bet you just can't wait to get out.
There is some really valuable information in this post. I certainly didn't know about gastroparesis or the pancreatisis tests.

So many thanks. I'm sending you positive vibes, and big hugs.

Blessings
Alex

[Sarahsmom46]

After 3 doses, I am feeling some relief but not complete relief. Of course I am eating no more than a handful of food at each meal and then get 3 snacks.  Angel food cake and orange sherbert plus herbal tea will be the last snack for tonight.  I actually don't have much of an appetite yet, but the doctor said that will come back.  I've been NPO more than allowed to eat anything in the past 2 weeks so tummy needs to enlarge again.  

Again, thank to all of you for reading the post maybe learning something from it, but also for the important feedback on what to expect from this drug.  I am ready to move forward now that the drug is working ok.  I am cleared to go home tomorrow. YIPPEEEE!!!!!!

Hoping you all have a wonderful weekend and lets all be healthy and thankful for what good is happening in our lives right now.  

Be well,

Julie

[twopack]

Hi Julie.  I've only got a minute.  Just got my hubby settled into the recliner post knee surgery and need to go get his pain script filled..... and maybe a six pack for me ;)

If you are getting that Reglan IV push you need to tell them to push it **SLOWLY** (as in over several minutes) or to drip it in mixed in a small bag of IV fluid.  Just as you do best with slower infusions of IVSM followed by a po taper, you probably need a slower infusion of Reglan to avoid side effects.  WTH?  Let's just say you really MUST have it YOUR way!  (Sing it with Mr. S.)

Here's to ending the puke and pain routine!!!

Later,
Mary

[carrie235]

Hi Sarah's Mom:

Yes, Reglan can cause anxiety and what you were feeling was from the Reglan.  I personally never got anxious with it (which amazes me, because I can barely drink more than a cup of coffee!!) but I know that for many people, this can be a problem.

Again, I would do my research on the Reglan and take it for the shortest time possible.  

I was taking it up to 4x a day at my highest and at the dosage, EVERYTHING was moving through my intestines at a very rapid rate!  ha ha.  Let's just say "I was in the bathroom a LOT".  

Anyhow, that's all I'm going to add regarding the Reglan.  

I hope you recover quickly!!!

[Cosmobirdy]

Julie,

I'm sorry that your first dose of the Reglan was so hard on you.  I'm guessing if they gave it via IV, it must be a pretty high dose, so maybe that's why.  I wish I could remember the dose I used to take.  I do remember that the GI had to up it from what he originally had prescribed.  I usually took it twice a day, but up to 3 times if I was having more problems.  I honestly never had any problems with the Reglan, so hopefully it will be easier on you once you go to oral dosing.  

I'm thinking of you, and I hoping and praying that the pain and nausea will soon be under control for you.  Did the neuro say how they might go about figuring if the gastroparesis is from the MS or the infection?
  
Hang in there....
Rita

[summerluvr]

I have taken domperidone for chemo side effects (helps nausea because it helps your stomcah empty),  and also when I took a different chemo that caused my GI tract to stop working (awful feeling or your stomach constantly bloated and no movement for days on end).

I'm in Canada.

They also prescribe this med to make breast milk flow increase. So I think it's pretty safe if they give it to mothers.

[ku111]

I am so happy for you to get some answers and relief!  I love to read when people figure out just a little bit more.  You have no idea how much this helps me sitting here in "liboland".  You have made my day!  Take care!

[Sarahsmom46]

I keep saying thanks all the time, but truely I am thankful to you guys for taking your time to share your experiences and send well wishes.  I talked to the GI doc thuis morning about the drug Carrie mentioned and he was very happy to tel me all about it but could not officially recommend it due to hospital policy.  I'll discuss it with my out-patient GI.  You all must know that it was Ren that first brought up Reglin and that was a week before the GI team caught on.  The knoledge base of this group is amazing.

Rita I just had my first dose of Reglin by IV push this morning before breakfast and it really threw me for a loop.  I felt really dizzy and queasy and it made me kind of anxious.  I got in bed and pulled the covers over my head as soon as I finished eating.  I hope the next dose goes better.  

I am waiting for the neuro team to do rounds sometime in the next hour.  My favorite neuro, the one I begged to becmoe an MS neuro during my priossion, came in to see me this morning.  She said the team is interested in seeing if there is a connection between the gastoparesis and MS or if it is a temporary post-infection issue.  If that is the case, then it may be temporary.  If it doesn't, then perhaps MS relatd.  Time will tell.  

You guys have been incredibly supportive.  I don't know how I would have gotten through all this iif it weren't for you all.  Thanks again so much and as soon as I am feeling better, probably when I can get home and a full night's rest, I will be back on the forum full-on.  

Love you all,

Julie

[Cosmobirdy]

I'm glad to hear you finally got an answer, but sorry to hear you are having to deal with gastroparesis.  I know all too well how painful and miserable that is.

I deal with that also.  My MS has caused my stomach to no longer empty, and has also shut off portions of my small intestine.  For me, it is not something that goes away.  I was on Reglan for about a year and a half, and then was switched to a different med a few months ago.  So far so good.  The GI doc said if that stops working, the next thing he would try is Botox injections into the stomach.

Hang in there - the Reglan should start to work pretty quickly.  Feel free to PM me if you would like... :-)

Bye for now,
Rita

[HVAC]

Good News. I hope you recover very quickly. I am sorry you have to go through all this.

Grady says barrr, barrr, barrr!

Alex

[Lulu54]

Well that is good news - an answer of some sort to your problems. Wow, Julie.  It is hard to believe you are still there in the hospital.  I hope the end has really come for you.

hugs,
L

[Sumanadevii]

Finally an answer!!  I hope they find what will work with your system and get you out of that hospital.  I know that WILL make you smile!

[Sarahsmom46]

Sarah that is very sweet of you.  It really makes my heart smile.  :)

Carrie,  the info is really helpful.  I will ask the GI doc inthe morning and see what he thinks.  The PA just came by and said they were going to give this to me starting tomorrow morning. It is going to be 3x a day before each meal and by IV!  That has me a little concerned . Another thing to bring up with the GI doc.  

They also started me on this powder stuff that helps get the digestive tract back to normal. It is the same thing they put in yogurt that clain to regulate the digestive system but I can't remember what it was called.  I hope this works as I don't want to depend on the reglen to fix this issue.  

Thanks again so much for the info.  I will definitely PM you later.  

Love ya guys,

Julie

[carrie235]

Hi Julie:

I think it took a couple of days for the full effect to kick in.  Just be very very careful and take the lowest dose that you can get away with.  That stuff scares the you know what out of me.

There is another drug that they sell in Canada called Domperidone that is very similiar to Reglan.  You can get it on-line.  It's not approved for sale in the US and one of my GI docs actually told me about it.  It doesn't cross the blood-brain barrier like Reglan does and is much much safer.  If I had to, I would order and take that before I took the Reglan.  If you find that the Reglan helps, I would look into the Domperidone.  If you want more information, PM me because I'm sure I can't put how I got on-line here in this forum.

[SarahL2491]

So glad you have news and will get better now!  Cheers from all of us and thank you for sharing this interesting tidbit

[Sarahsmom46]

Thanks for your response.

I also had my gallbladder taken out about a couple of years ago and it seems I was having about the same symptoms as now. Makes me wonder if I really needed it out except there was a stone.  It was the right decision.

I am so happy to hear that Reglin helped you so much.  I haven't taken my first dose yet, but can't wait to be able to eat without being in so much pain.  How long did it take before you notice the relief?  The first dose or longer?

At least 3 doctors have given me the side effects news about the facial twitches and that does concern me.  I am hopeful that I won't have to stay on the drug any longer than necessary.  

Thanks again for the helpful information.  It came at just the right time.  

Have a good rest of the day.

Julie

[carrie235]

Hi Sarah's Mom:

I happened to see your post.  I am glad that you are getting to the bottom of things.  I had a lot of stomach issues a few years ago but it turned out that my gallbladder was the culprit.

During this time though, I was on Reglan.  It was a GREAT drug and gave me so much relief.  You will probably be fine, but I think it's important that you know that Reglan is a "black box" drug and when given in high doses for a lengthy period of time, can possible cause a movement disorder called Tardive Dyskinesia.  

I was hesitant to post this and almost didn't because I don't want to scare you, but keep an eye on yourself.  If you start noticing that you are unintentionally making any funny faces or your tongue starts quivering in your mouth, consult your GI immediately.  Don't wait because if you continue the drug, the disorder can become permanent.  I actually noticed while on the drug that I started making these weird movements with my mouth....don't know if it was related or not.   My GI doctor will not prescribe this drug because of the potential for this.

Also, this problem seems to occur more in older woman.  They think it has something to do with declining estrogen levels.  I don't know.

Good luck and I hope you get better soon and find some relief!