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My Topic Wants List is dwindling....
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My Topic Wants List is dwindling....

My MS Topic Wants list is dwindling - anything you want me to dig into? You know I'll be all too happy to find something good for us.
Spill your wants :)

-Shell
33 Comments Post a Comment
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Financial help lists for our expensive drugs!!
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198419_tn?1360245956
Sarah - you really want to keep me busy, lol  Alright - I'll work on it ;)
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198419_tn?1360245956
Check this link to participating patient assistance site.
The link should bring you to page with a box - I typed in Provigil (in the search term using drug name), and it brought up the company's program, and I also tried it with Avonex....  Quicker than linking a whole host of individual websites!

http://www.pparx.org/en/prescription_assistance_programs/list_of_participating_programs
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thanks Shell
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1781490_tn?1318655065
A cooling vest. What type and kind is preferable
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1781490_tn?1318655065
Sorry meant to post here
Any details on cooling vest gear
What likes dislikes
Works or not
Thx. Gonna be a hot summer
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198419_tn?1360245956
Hi Princepaso,

Here are a few of our discussions on cooling vests with info.
You can find more using the search this community feature - let me know if you have a problem finding it.

For starters:

http://www.medhelp.org/posts/Multiple-Sclerosis/Another-question-about-cooling-vests--etc/show/1220514

http://www.medhelp.org/posts/Multiple-Sclerosis/Cooling-vest/show/1532004

http://www.medhelp.org/posts/Multiple-Sclerosis/MSAA-cooling-vest-offer/show/1546038
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Hi, shell.
There is one thing I'd love for you to research, because I keep coming up with nothing.
MS effect on the interior anal sphincter muscle & inability to completely empty bowels.
I've seen 4 G.I.Doc's and not one of them could find a solution to the problem. One G.I. Doc prescribed Misoprostol, to help my bowel contract, and all it did was give me diarrhea, which I cannot pass. (Stool has to be firm enough to force that muscle open.)
I've gone through every bowel test imagineable and the only one that showed anything was the Dynamic Proctography, which showed I have absolutely no urge to evacuate.
I am so tired of the feeling of stool, just sitting on my pelvic floor.
Thanks in advance.
(((HUGS)))
Sheila
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198419_tn?1360245956
You got it Sheila. Tell me 1st if you have spinal lesions?
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HI,

yes i too have the same problems - I do have a lesion(s) on my spine, and I am unable to 'go' unless I have some serious help along the way, which gives me terrible stomach cramps as I have to take so many!

any advice appreciated,

thks
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shell,

I have MS without visible lesions. Thanks for any thing you can find. I am so fed up with G.I. Doc's "thinking" it is constipation.

My one good G.I. Doc understands that it is not constipation, and prescribed Misoprostol to help my bowel contract, but all it did was give me diarrhea, which sits there, because it cannot force the muscle open.

(((HUGS)))
Sheila
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You have the same problem?

I'm stunned, I haven't found anyone else with it. But, I am sorry that you are also dealing with it. It is miserable.

May I ask, when you use anything to help, are you able to evacuate completely, or does your internal anal sphincter muscle seem to clamp shut?

Sheila

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198419_tn?1360245956
Here is a small study from the past. But, there is some good info here (for starters) I know you can relate to. And, will give you some key words you can use for future research.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC488276/pdf/jnnpsyc00521-0027.pdf

The key words I've found to be helpful initially for this particular topic are "sphincter incontenence multiple sclerosis"

Would be good to find some success stories (i.e., meds, or therapy)
Hope this helps lady. It sure is misery - no one should have to endure what that restriction does to us.
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Fatigue meds other than provigil.  I'm on amitriptyline and soon starting a beta blocker, thus I can't take provigil.

Thanks,
Laura
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shell,

I can't begin to thank you for taking the time to do the research.

I'm going to the info and see if there is something I can take to my next appt. with my MS Specialist.

Right now, I am dealing with chronic diarrhea. I've been dealing with it since June. But, I realized a few weeks ago, that my D.O. increased my Diazepam last May or early June, and the color of the tablet changed. So, we "think" it was caused by dye in diazepam, so I had to switch to taking 2 2mg. of Valium 3 x a day, because it is a white pill. Valium. I am hoping this is the problem.

Whoever said MS is not for the weak wasn't kidding.

Thanks, shell.

(((HUGS)))
Sheila
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Darn! I can't access the article!

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Never mind, I got it! :)
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1251333_tn?1383963670
Ahhh.  This is a nice post!  :-)

Ditto on the Fatigue question.

I have a neuro appointment on Monday and we're at the "Well, what do we do now for a DMD"?!  I was trying to do some research today on the status of the BG12 FDA review before my appointment so I can ask about it.  Do you know anything about that?  
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Hi Shell!
You are so wonderful to do all this helpful research for us! I would like more information on help for severe leg spasticity. I take Baclafen and Zanaflex daily as well as Botox shots in my leg every 3 months. I work out daily and go to physical therapy for an hour each week. All of these things help but the spasticity in my left leg stil gets so stiff at times that I can hardly walk :(  If you can find any info on other treatments that would help, I sure would appreciate it!
Thanks,
Deb
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Lots of the problems members are asking about here could be addressed by a physiatrist (physical medicine specialist).  I'd specifically look for one who cares for lots of people with spinal cord injuries.  They are the docs with special training in how to manage bowel routines for people with no control.  They can also balance drugs and therapy to minimize spasticity without constant drowsiness.  These are things they have perfected from experience with patients rather than in classrooms.

These docs might be easiest to find around VA hospitals.  Unfortunately, lots of returning soldiers are preparing to live the rest of their lives with these issues as well.  

Maybe you could do something about the value of this specialist for PwMS Shell.  They are the next best thing to a good MSologist, imho.  As a pair there's nothing better.

I think Lulu made a Health Page last year about ways to deal with the heat.  She shared what she had learned at a web- or tele-seminar and then added in ideas from our community discussion.  I'm not sure if that is one of your links from earlier.

I don't know much else about fatigue medications.  I just wrote that up pretty thoroughly last week.  If fatigue persists Laura, you may need a doc who can re-evaluate your present medications.  It could be you are taking something (or several somethings) that need to be adjusted.

Thanks for your generous offer here Shell.  I know some of these things have been rehashed lots of times.  They can just be hard to find.  It seems we always need more Health Pages.  

Mary
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198419_tn?1360245956
Jifr,

Yes - I do not believe BG12 will be available before next year. Your doc may suggest something in the interim.

I'm working on compiling some of our past posts regarding fatigue, with the addition of off-label meds. It's something that encompasses lifestyle and therapy in addition to meds (like you mention Mary) so I could find something to compliment the topic in general.

Debgen - will work on that too - if even pulling the info we already have on the health pages....sound like you are having your fair share of pain with that and it's seriously altering you. I commend you for keeping at your therapy, and the combo of meds.

The SCI literature/docs is excellent advice Mary - I know for certain they will work with the combo Debs on.

It's great you are getting the botox Deb. Something SCI patients have to fight a good fight with the insurance companies for. Sounds as if your docs are really working to help this - maybe I'll come across something additional you can bring up to the docs.

Thank you all so much for stating your Topic Wants here. It is hard to keep things organized on an open forum like this. So, I'll do my usual, and title it Topic Wants """ and then the topic so we can find it easier. I encourage all to do this for topic specific discussions. Just easier to search for key words.

Keep  em coming...
-Shell
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1710955_tn?1309450073
Mary and Shell-

My pcp is contacting my neuro to reevaluate my meds.  I saw her yesterday and she's suppose to call me today.

It's very hard for me to make any lifestyle changes right now.  It appears that my knee surgery that I had on May 4th hasn't helped at all.  It's looking like it only made my knee worse.

I'm a physical and emotional basketcase.  I've been crying on and off all week.  I'm so very frustrated with everything. I feel like I'm a medical freak show!

Mary- I did read everything you wrote and complied together for me.  I read everything.  I'm just soooo desperate to get to a place where I'm functional every day.  I have so much guilt for my family and not being able to do the things I used to.  I'm also desperate to find answers.  I didn't mean to offend you by asking Shell for help too. Just looking to see if there's any info that she has that may be different.

I appreciate everyone on this forum, so please don't feel any disrespect on my part.  I'm sorry if I offended you.  I truly appreciate any and all help I get from this forum.

Thanks Again,
Laura
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198419_tn?1360245956
Soooooooo this solicitation for topic wants was in May......

All from this add-on list were covered I believe by way of this thread.

And, there are many discussions/topics that can be easily found by entering in the search this community box by typing in: "topic wants" and be sure to use those quotes!

Since we are in constant flex depending on whether we have many active veteran MSers on the forum, or those newly diagnosed I'm reaching out again.

So, does anyone want to add a new topic here? Don't worry about repetition - If it's been covered already, I'll simply bump it, and if new, we'll address it.

Let me have em!
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Natural remedies for MS symptoms. Vertigo and weakness mainly.
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751951_tn?1406636463
God bless you, sister!

I was wondering if there's a simple chart on DMD's, just in case I ever get Dx'ed.  Like, what's daily or weekly, what's contraindicated with which other drugs or conditions, what the most common side effects are.for each, etc.
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198419_tn?1360245956
Excellent! I will look into the natural supplements, and a chart! I made one long ago, but it needs updating!
--shell
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Pastor D - This list in this past-post is a gem...check it out.

DMD List:

http://www.medhelp.org/posts/Multiple-Sclerosis/DMD-List---Most-comprehensive-in-one-spot/show/1789999

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198419_tn?1360245956
Also, from the MS society DMD list
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx

The one I bumped and linked above though -- I feel is more comprehensive
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751951_tn?1406636463
Comprehensive is good, but I was looking for simple.  Also, since I am reading via my supposedly-smart phone, the link doesn't work.  When I type in the blog address,  all I get is a list, with no real info about anything.  I will wait until I get home late tonight, and try again from a real computer.

Thanks again, Shell!
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Welcome ;)
Anytime - For simple, definitely use the MS society link - that one is easy enough and you can click on each med for more info....
-shell
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1251333_tn?1383963670
I have one for you....

How often do people with MS end up with Cushings as a result of the steroids?

Everytime I finish a steroid, my latest round was Acthar, my body feels like it turns into one great big massively bruised pulp.  It hurts to touch my skin, put a bra on, put socks on, etc  You name it.  It is agony for about a week after I finish the meds.  As it started to get better...I dropped almost 8 pounds in 2 days.  

My supposition is that every cell in my body swells to near bursting and when the cycle of whatever "happens" is finished - my body purges the excess water.

I was in despair after the achthar and did a lot of reading on the symptoms I was having. Cushings came up and I read something about it being related to or caused by steroids.  (overuse/frequency...?)

Any news on that?
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198419_tn?1360245956
Hmmmmmmmm No, Jifr, that has never been on my radar. I'll see what I can do though - and, don't feel bad to remind me
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Thanks again, Shell.

The MS Society site has a great little ("little" HA!  It's 14 pages!) PDF pamphlet that puts things out there pretty clearly, if you can adjust your screen to fit it well enough.  (Trying to reduce my impact on the world's forests by not printing too much of this stuff!)

They also have an "Expert Opinion" treatment guidelines pamphlet (half that size); the first couple of pages of that I might take along to share with neuro this morning, depending on how the conversation goes.
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