Greetings!
This is a support and information site for people who have been diagnosed with MS, who are in the process of being tested, and for those who have loved ones with MS.
I hope you'll have fun, ask questions, and share stories about what it feels like to be you. Unlike laboratory mice, we were bred to lead full lives. Feel like you're running around in a maze? Then shed those whiskers and tails, put on a pot of coffee, and come on in!
About Me
- Kim Dolce
- Having taken turns writing for radio and reference books--and cranking out an unbearably serious first novel--I'm now exploring the lighter side of life: Having MS.
War on Terra: A Picture Journal
Jungles of Maiden Lane
Lost: One husband off the coast of Lake Erie. Last seen wearing leather hip boots and a cutlass.
Toby the Pomeranian, guarding his rose bush.
Backyard ceasefire: Black Lace waving white flag in foreground.
Psych Ward: My writing room. They let me out Thursdays and every other weekend. Not pictured: Bloodied brick wall, which I routinely run into, head first.
Hi Kim,
ReplyDeleteI am very excited about this website you have set up. I hope it really takes off. You are amazing. You can do anything you set your mind to can't you.
BTW I don't know if you have been back to the other site, but alot of people including myself have sent messages of comfort for your loss that you might want to read when you feel up to it.
I will add this site to my favorites and come back regularly.
Take care
Terrie
Terrie,
ReplyDeleteGlad to hear from you! I have checked the board recently and have posted a response to the kind words that so many people expressed.
I can't tear myself away from that board, I have been reading it, just not posting. I care too much about all of you to stop keeping track of how everyone is doing.
Flap's appeal was very compelling. It made me think. Lots to think about.
Kim
Hello Kim,
ReplyDeleteJust stopping by to check out your site. I look forward to seeing (and possibly participating) in its development!
Dave (swampster)
Hi, Dave, and welcome!
ReplyDeleteI hope you do participate in its development. Any suggestions you have would be appreciated.
I'm beginning to feel like a mutineer--but I'll get over it.
Kim
Terrie,
ReplyDeleteI'm interested to know if Copaxone will improve your bladder symptoms, in addition to your other symptoms. You mentioned that your neuro didn't rx any anti-cholinergic meds for now, and that the steroid treatment helped some.
I've had a similar experience. Prednisone helped the bladder some, but stopped after I went off it. Rebif seems to have helped, too. But the two anti-cholinergics I took didn't help at all. I'll be discussing this with a urologist soon. Have you seen a urologist at all?
Bladder problems can have a greater impact on daily activities than other symptoms.
Kim
Hi Kim,
ReplyDeleteI have hopes that we all can help each other with many issues with this monster.
Jim
Hi, Jim, welcome!
ReplyDeleteI'm glad you checked in! The more support, the better for us all. I hope to get to know you better.
Kim
Kim:
ReplyDeleteMy Ms doc and I talked and first she needs a copy of the MRI I had done two weeks ago, and the radiologist report. I read it, and I have new lesions and the some lesions I've had have gotten noticably (sp) larger. I have a 7 mm brand new one right in the center of my frontal lobe. It was very bright on the MRI,couldn't miss it. Anyhow, she needs that. We also talked about keeping things as they are for a few more months, give the copaxone some time to work and watch and see.
We also discussed this doesn't mean I ignore things that ramp up and get worse, or get a new symptom. She said she is available for me, and we may need to change our minds on staying in this holding pattern for 3 months depending on how I am doing. So, I will get the MRI up to her on Wednesday (she's an hour away in Portland)and we will just wait and see.
As for my incontinence problem. Because I am suddenly aware that I have to go very bad with no warning, I lose a small amount trying to get to the bathroom, so I am using panty liners for now, which are working fine. And it's frequency of happening is small. maybe like once or twice a week, and it doesn't always result in not making it to the bathroom on time. So I am willing to wait for now. Clearly if this becomes a larger problem, I will demand a treatment, referral, or whatever I need to help me.
Notice the webmd support group has been dead all weekend so far? Everyone must have gone on vacation.
Take care
Terrie
Hello Terrie,
ReplyDeleteI too have bladder problems. They have stabilized since being on Tysabri. They did improve slightly, in that I don't have to go so often anymore, especially at night.
I tried several of the prescription drugs that were supposed to help, but they didn't do diddly for me so I stopped taking them.
I hope that once the Copaxone kicks in your bladder function will improve!
Dave
Good morning Kim:
ReplyDeleteARARRGGG did I blow it on the web md support group? Playnice posted what she does for the holidays, I commended her, and told her what we do for the holidays. I am pagan, as you know. Well someone said that one of us, either flap or myself stepped on her toes, and she's a christian. Then someone posted "here comes the drama" and I said this shouldn't be a drama issue, if this person feels I said something that hurt their feelings I'm sorry, they need to let me know what I said, because I went over both flap and my responses, and didn't find anything that would hurt anyones feelings.Both the "heres comes the drama" post and my response to it disappeared. Just because I'm pagan doesn't mean i have a problem with any other religion, or that I am right and no one else is. I have my faith and love it. I am very happy. Others have their faith that makes them very happy, that they love, and I think that is great. Why would I tell someone they are wrong in their faith? I'm not that kind of person Kim, and you know i'm not. But now Tammy has posted a question about how this is suppose to be a support group, not a place to hurt eachother. So I said I was sorry, and I didn't mean to cause a problem, but we will see. If this blows up into a big deal, I will quietly leave the group. I don't need the drama, and I didn't mean to hurt anyone, and I would rather leave myself han have others leave because of me you know?
Big hugs Kim thanks for listening.
Terrie
btw - I am sorry I used your site to vent and whine about another site. forgive me.
Terrie,
ReplyDeleteI'm totally confused about what happened--I didn't see anybody offended in that post, and certainly not by you! I'm not sure what that was all about.
The "drama" post might have been misconstrued--but I notice that poster tends to drop in and post prickly, cryptic messages lately without any context. When people don't explain their remarks well, mayhem can ensue. So it looks like a big misunderstanding, but not because of anything you wrote.
And don't worry about using this site to express yourself, that's what it's for, love.
I'm sure your friendship is valued by everyone on the board, I know I appreciate your support. I know it's an icky feeling to think someone has taken offense at something, but try to ignore it and keep being yourself. Remember that every post is kind of a set up for controversy, so whoever wants to find it, will.
Be your wonderful self, Terrie!
Hugs, Kim
I noticed this morning that Tammy wrote a post about how come we can't all get along, I replied to it, carolyn replied to it. Nothing bad was written, but something must have sparked controversy because the entire post is gone as far as I can tell. I think, instead of posting about it, we just need to practice being kind to eachother, and supporting eachother. And try not to accidently step in it. We can monitor ourselves in that respect, so my bad was responding to that girl at all because I didn't see anything wrong with my response. I shouldn't have taken the bait.
ReplyDeletebig hugs to you
Terrie
Terrie,
ReplyDeleteI have simular problems of bladder control or technical term "Overactive Bladder" - meaning you have to go right now, little to no warning.
I tried Detrol LA, useless for me. Then I tried EnableX, it worked great but the constapation side effect was too much.
I used to be very regular, every morning, but with this EnableX I would not go for several days until I drank two "Smooth Move" cups of teas and took 3 exlacks.
Needless to say, no more drugs for that. I will just have to do lots of planning.
Jim
OMG did everyone notice that the post swampster put up about censorship has disappeared? I added to that post, as did Tammy and Kim, and they took it away. does anyone know who was the last person to post something and what they said before it was gone? Was it me? I'm starting to feel like anytime I post a response to anything it disappears. Am I the one being picked on, or just being paranoid? Bottom line, I don't know how much more I can take, so don't expect to see me there as much anymore. I didn't see anything wrong with that post, and I want to be able to speak about how I feel, without putting someone else down, using bad language, or doing anything that anyone who got through elementary school knows is not appropriate. Apparently, I can't do that because if my personality shows through, it goes away.
ReplyDeleteOH, and to respond to you bear, I am having serious problems with my lumbar spine, and I am getting an MRI pretty soon, because I have severe pain, radicolopathy(sp) and possible stenosis(sp) so that might be causing my bladder problems as easy as it can be my MS. So right now It's lets wait and see what my back shows before we begin treatment for the bladder symptoms. With this and my colonoscopy and endoscopy on friday, I'm having a great time. lol. Thanks for responding to me with your situation and what hasn't worked for you, and what you are finding to work.
ReplyDeletehugs
Terrie
Hi,Terrie,
ReplyDeleteSorry to hear about your mounting physical problems. I hope you will avoid back surgery, I always hear so many stories about it causing more problems than it solves. My neuro wanted me to get a herniated cervical disc removed, but after two second opinions to the contrary, I felt justified in rejecting the whole idea.
My take on the message deletions: The moderators are trying to tell us all to avoid writing about what to write about :-)
There's always my blog! As far as I know, I'm the only one who can delete messages here. Not a lot of traffic yet, unfortunately, but a definite lack of drama!
Kim
good morning:
ReplyDeletenot to be a bitch, ok, maybe I am, but if you want to know who the culprits are, just read rocks and stuff, they are the problem, with the exception of dave, who put his two cents in his defense. I reported it. Figured give back what they keep doing to us. So if you haven't seen it,read it soon.
Anyhow I hope you all had a good weekend. I had a horrible experience with the colonoscopy. They did it in an almost office setting, not a surgical setting, so no anesthesiologist (sp lol) and they gave me the most medicine to sedate me the law allows, and I was wide awake, they could have given me saline as far as my response to the meds were. I was wide awake for the whole thing.
I was yelling, begging and holding the bars on the side of the bed so hard I probably bent them. They offered to stop, and do it in a surgical center but I didn't want to go through that horrible prep again.
My bad, I am having nightmares now, and I cry alot when I think about it, so I think I was traumatized (sp) by it. Oh well, at least I learned something. I always knew I am hard to put under, but didn't realize it was that bad, so I will never have an invasive procedure done outside a surgical center with an anethest(ok you know what i mean, not gonna try to spell that again.)
I need to have the scope done down my throat,but we are rescheduling that in a surgical center. My doc said that would be worse, and I just can't eat anything after midnight before the procedure for prep. At least I spared myself that.
Anyhow, we all know, if it's gonna go bad for anyone, it will go bad for me. It's Karma from a past life or something.
Have a great monday, and I will check in later.
hugs
Terrie
Terrie,
ReplyDeleteI am SO sorry you went through that! I had no idea the procedure was even done that way anymore! It must have been terrible, I can't even imagine. I'm glad you're going to have the endo in a surgical suite with plenty of drugs.
Baby yourself a lot today, you deserve it, dear.
The rock-throwers may soon get buried in an avalanche. I'm steering clear of the danger zone until the clean-up crew goes to work :-) Al(ways) posted a very clever message, using emoticons in place of words. I smiled, but felt sad that people are starting to hold back from fully expressing themselves.
I hope you'll rest a lot and feel better, Terrie. If there's anything I can do, please post or email me, love.
Hugs, Kim
Hello all,
ReplyDeleteI posted a response I received from the WebMD "support" staff to my post about censorship under the Always emotican post.
Note that no where in their reply do they indicate what was wrong with any of the posts, except to say that the posts deleted violated the terms of agreement. Some help that was!
On another topic, I heard from a fellow MS'er in Florida about some Tysabri users being asked if they wanted to take a 6-month "holiday" from taking Tysabri. I donm't know what the reasoning was behind the idea of a holiday. If I discover more I will let you all know.
Dave
Hello All,
ReplyDeleteTomorrow is shortest day of the year as far as daylight goes. Up here in Fairbanks, Alaska we will get about 3 hours and 40 minutes of available daylight. If it is cloudy out then it never gets much brighter than twilight.
Moderators are continuing there harsh censorship practices on the webmd board. A post to me from either Terrie or Tammy was deleted (at least I got to see it and respond before it disappeared!) What a bunch of anal-retentive putzs!
So Kim, be sure and have your sister put me on the mailing list for the artificial limb light fixtures!
Dave
Dave,
ReplyDeleteIt's like any other business, in my experience. Power makes the rules and doesn't compromise.
The moderators made it clear that they'd delete anything remotely antagonistic. So that's what we should expect from them. They are consistent, if anything.
Maybe you aren't used to it since you've always been your own boss! My dad never worked for another soul, always self-employed. He wouldn't have made it in a corporation, way too rebellious.
Anyway, the light fixture thing was a good laugh, I kind of doubt that Susan will actually follow through. But if she does, you'll be our first customer!
Kim
Hello All,
ReplyDeleteI had my 36th Tysabri infusion today and as usual no problems!
That is 3 years now that I have been on Tysabri and so far, my MRI's have shown no new lesion formations. True, my walking ability has deteriorated over this time, but I never expected the drug to stop my slow decline, but to stop or at least significantly slow new lesion formations.
It has done that so I am happy with this MS drug treatment.
Dave
Dave,
ReplyDeleteYour Tysabri experience has had a great impact on me. I plan to switch over soon.
If it weren't for you and others on the board, I wouldn't have known anything about this therapy option. Thanks for the education, my brother!
Kim
Hello Kim,
ReplyDeleteLook...I already have 6 sisters! But, if you really need another brother then I guess I can handle another sister! Geez, Always is one of my sisters too so that makes you #8 Kim!
So, now that you are my sister my shoe size is 9 1/2 (for when you start knitting my socks)!
What are your plans for celebrating the new year? We don't have any. As a kid my family always had a big celebration but as an aging adult I don't care for it. Just another night to me I guess.
I hope you and yours have a relaxing New Years Eve and that the new year brings you some relief from you MS!
Best,
Dave
Congrats on 3 years!
ReplyDeleteI too have had great experience from Tysabri when compared to shots. I only have had 8 infusions so far. The drug works well and BioGen Idec charges more for this benefit than the crabs charge.
I hope there are no must do holidays, except for New Years.
Jim
Jim,
ReplyDeleteI just called Biogen, and it sounds like the major hurdle is paying the infusion center fee. With no insurance, hopefully I can get a la carte financing through NORD and Biogen.
Dave,
My, you have small feet! How did you manage to stand without falling forward before the MS?
I used to knit, but the fingers won't work anymore. How about I just paint on your socks?
Happy New Year, guys!
Kim
I hope that you are able get some help with the infusion cost. I realize that Biogen Idec has billions or rather lots of fat but the infusion center probably does not.
ReplyDeleteMaybe your nero has a suggestion or possible avenue to pursue? He must have other Ty patients that are able to get the drug from Biogen and need some help with the infusion.
See ya in 2010,
Jim
Hello all,
ReplyDeleteBoy o'boy, the new web md MS board has sure taken a hit! So far it doesn't look like any of us like what has been done to "our" board!
Maybe this is just what this board needs to get more of us to post here!
Kim, how are you doing? It doesn't look like you have been posting much here. Are you bored with it or disheartened by the small response? I will try to be more active here since it looks like the "new and improved" web md board is not to my liking.
Only time will tell I guess...
Dave
Hi Kim,
ReplyDeleteThis is great that you set this up.
I'm very frustrated with the Web MD Board too!
I haven't been well at all lately. My cognitive issues, and exteme fatigue is just out of this world!! Urgh.
I'm really happy though that I have friends that I can talk with.
Hugs...see you on FB too Kim!!
Caroline :0)
Hi, Caroline and Dave,
ReplyDeleteI'm glad to offer this alternative to the group, and hope to see more people use this site.
I haven't done much with it since December since there hasn't been any traffic.
Since this site can't be found by doing a search, it is virtually impossible for the general public to discover it. So it'll be our private little forum, I guess!
Caroline, sorry to hear you've been feeling crappy.
Maybe spring will revive us all.
Kim
By the way, Tysabri #1 has been schedule for March 16th.
ReplyDeleteKim
Good morning Kim and Caroline,
ReplyDeleteAlrighty then on the first Tysabri infusion! You can officially become a Tysabri Lab Rat on that date!!
Caroline, I take Provigil (modafinil)for my fatigue. It works pretty well for the most part. I still get fatigued and have to take a nap but not as fatigued as I would without it. Have given it a try yet? I can't remember if you have or not...
So, here we are!
Best to you both,
Dave
Hi Kim & Dave,
ReplyDeleteCongratulations on the Tysabri!! I hope it works well for you! Al is on #2 infusion soon. You can be Ty buddies.
Dave, thanks for the provigil thought. I have tried a couple different meds to help with the fatigue. Unfortunately, I have anxiety issues...and this worsens when I take them.
Exercise really helps me....so I try to do that when I can. My kids were both sick...and shared it with me..urgh. Whenever I get sick now...it just hits me very hard! Wipes me right off my feet. So hopefully I will be on the mend now.
Thanks you guys for your supportive thoughts!
Hugs,
Caroline
Hello Caroline,
ReplyDeleteDang those kids anyway!! Just kidding,(I think...).
So, how is everyone doing today? Good I hope. I am doing okay I guess. I have an appointment with an acupuncturist this coming Monday. We will see if sticking those little needles in my bod does me any good. You will be the first to know!
Can't wait can you!?
Dave
Dave,
ReplyDeleteI hope you'll have a good experience with that.
My one and only acupuncture session made my symptoms worse, but it does help some people. Hope you are one of those!
Kim
Hi Caroline,
ReplyDeleteI too take Provigil for fatigue. It works very well.
A mega dose of Vit B-12 does work for some people. Many of those energy shots/drinks have lots of B-12 in them.
I use to take a supplement that had 3000% daily amount of B-12. It use to work but it finally wasn't doing much so I stopped and broke down and started taking Provigil.
Hello all,
ReplyDeleteTomorrow I am going to a seminar on the newest and latest info on the oral meds that are either out there already or soon to be approved (by the FDA).
I assume one of the manufacturers of the drugs will be putting on the seminar since a free lunch is included in the package!
I will report back here about what I learn and give you my own personal opinion about the drugs (I know, big whoop right?!).
For what its worth,
Dave
Hi, Dave,
ReplyDeleteLooking forward to your report!
Kim
Hello all,
ReplyDeleteThe seminar I mentioned that was supposed to be about the new oral medications was a disappointment.
The neuro who made the presentation spent about 25 mintues of the 2 hour talk on the new oral meds and even then the info was pretty skimpy. I think the guy was more interested in pitching his business than he was in discussing in a knowledgeable manner the up and coming new oral meds in the pipeline.
So I didn't learn anything new, except that the preliminary data have shown that the oral meds are no more effective than the current set of drugs used to treat MS.
Tysabri still appears to have the best treatment rate of all the drugs. So I am not about to switch!
Dave
Hi, Dave,
ReplyDeleteNot surprised. Sounds like exactly what I've read about these oral meds on the internet. At least they are an alternative to the CRAB drugs, I suppose.
Thanks for reporting back!
Kim
Hello all,
ReplyDeleteI went in for my 1st acupuncture treatment yesterday. The experience was very relaxing with no negative side effects or effects of any sort.
The idea behind acupuncture is that its effects are accumulative. So I will be going in once a week for a while and see if I get any benefit out of it.
Dave
Dave,
ReplyDeleteYikes, they are pulling you, a scientist, over to the dark side of alternative therapies!
Acupuncture, as you may know, is the "gateway drug" to whackier stuff such as sweat lodge retreats and hyperbaric chambers.
Just don't let them put you in a saffron robe and sandals! Yeeeeaaaaaaaaah!
Kim
Hello Kim,
ReplyDeleteToo late!! I was fitted for my saffron robe and sandals just yesterday! First thing when I entered the sweat lodge was to get doused with a bagful of smoke from some sort of incense (smelled like weed to me but...)and then the measurements were taken.
The babes that measured me were all naked...is that how it is supposed to be? They were giggling too when them measured me?? Geez, is this good or bad?!
No sign of a hyperbaric chamber so far but you can bet I will keep an eye out for it! Can't be too careful around these nut jobs!!
I hope you upcoming Tysabri infusion goes well!
Dave
A technical glitch is preventing me from posting a new discussion on WebMD, so I'll post my announcement here:
ReplyDeleteI had my first Ty infusion today, and it went really well. The facility was very nice. It was a positive first experience. That's it, I guess!
Kim
Good morning Kim,
ReplyDeleteAlright!! The first infusion is done with and now you know how delightful it is to go and get the infusion. I always look forward to infusion day.
I hope you will post any changes, good or not so good, that you feel as you go through your Tysabri experience.
Best to you,
Dave
Howdy Kim,
ReplyDeleteCongrats on #1. Hope everything goes well.
I had my #11 today and it went very well. The TV was on there and I could not beleive the bs on it, it was a Rachel Ray show. Now I know why I don't watch it anymore.
The nurse told me to use the other arm next time as my vein is getting harder to got in, something about scar tissue(huh). Oh well, if this is only draw back to the infusion I can live with it.
Jim
Hi, Jim and Dave,
ReplyDeleteOne thing I noticed is that technology has advanced in the ten years since I last had any kind of infusion.
They used a retractable needle and a tiny, bendable acrylic tube in my vein. Once the tube is in, the needle slides away. Awesome!
Jim, I was wondering if you get the prep blood draw done in the same arm as your infusion. My nurse told me they prefer to do the arm opposite the one for the blood draw (though she used the same arm for this infusion). It's never simple, is it?
Rachel Ray is a hack. I watch Gordon Ramsay. He'd eat her liver for lunch with a nice fava bean chutney!
...which gives me an idea for dinner tonight....
Kim
Kim,
ReplyDeleteWell I always have used my left arm. I tried my right but that caused me to do nothing except sit there because I'm right handed and my left side of the body is all ms, right side is normal. They usually take the blood first and use same iv needle.
I must be in a low tech place because the iv needle is the same thing I had 15 years ago.
I don't watch TV or even have a one so seeing that crap was a real eye opener. Must be because there are so many channels and time(24hrs) to fill.
Jim
Jim,
ReplyDeleteI have to have my blood drawn two or three days prior to my infusion. Are you getting your blood drawn the same day of your infusion? Maybe I misunderstood.
I hear you about TV--though I do watch at night. Cable has a few shows I like, but the rest is pretty much forgettable stuff. You aren't missing much!
Question: Have you ever had physical therapy? I'm thinking about looking into it for my leg issues. Now that I'm taking B-12, I have the energy to take walks. But my leg goes lame after walking three blocks.
It's so frustrating. I'm going to take my foot-drop brace out of mothballs and strap it on today, but that just keeps my foot at a 90-degree angle. Any suggestions?
Kim
Hello Kim,
ReplyDeletehow does one post a new thread on this site?
I had my 39th Tysabri infusion about a week ago and no bad side effects, as usual. My doc wants me to start taking Ampyra. I filled out the paperwork and no wait to see what the insurance carriers have to say. I will let you know what happens with that!
Best,
Dave
Hi, Dave,
ReplyDeleteGlad to hear that you're going strong on Ty.
I'm real curious about Ampyra and considering asking for it myself. Let me know how that goes for you.
At the top of the page in the dark blue banner click on "New Post." That will start a new thread.
Kim
Hello Kim,
ReplyDeleteGee, ask a silly question and get a perfectly rational answer in response!
Thanks,
Dave
Good morning Kim,
ReplyDeleteI can see the bright blue banner but there is no "new post" to click on!
Dave
Uh-oh, I guess that means I have to start a new thread. Sorry about that, I'll post a new one.
ReplyDeleteAnyone here ever done IVIG? does it really help? My dr says if they do this & I feel better they will start me on Copaxone. I remember Justducky saying she was dx as CIS & thats what they will dx me as. Any input would be great. This IVIG is very expensive!!!!!
ReplyDeleteTammy
AKA mmthlvr
Hi, Tammy,
ReplyDeleteGlad to see you on my site, welcome!
I haven't had IVIG, only Solumedrol. I'm not familiar with it, and only first heard of it when you posted about it on WebMD.
Hopefully somebody will be able to tell you more about it. Please let us know how that goes, and what you learn about it.
I'm curious why you are on Copaxone therapy without an MS dx. Why are they hesitant to dx you? Do tell!
Kim
I'm not yet on Copaxone, but if this IVIG improves my syptoms then I'll start meds. My DR says I'm a complicated case, aren't we all. I'm very pushy about starting early treatment, I have lesions & symptoms but only 1 attack. We all know the Mcdonald criteria, so he he said he'll lable it CIS. Every other possiblity has been ruled out. Early treatment is very important but it seems to be impossible to get an early dx. I just found out this IVIG cost $50,000 for 5 days, my cost $5000.00. Guess I'm not doing this:( Tammy
ReplyDeleteHi, Tammy,
ReplyDeleteWell, at least you're going to start Copaxone. I got labeled cervical myelopathy after flareup #1. Solumedrol, prednisone, and then "here's your hat, what's your hurry." Good that you got your foot in the door and rattled some cages.
Sad that you probably could have had the IVIG free if you were uninsured and destitute.
So, what's your Plan B?
Kim
I'm gonna have to do the steroids. It will be oral, but I don't know for how many days. The burning has been really bad & the twitching & muscle spasms last night were nasty. It's getting hot so my symptoms are getting worse. I know Copaxone does nothing for symptoms, but if it can slow it down it, even a little, it will be worth it.
ReplyDeleteI'm sorry if I don't remember but how long did it take to get dx after your 1st flair?
Hi, Tammy,
ReplyDeleteIt took six years to get a dx after flair #1. Felt like forever.
Kim
Makes you wonder how they know early treatment helps when it take forever to finally get dx. This is so much better then webmd!!!!
ReplyDeleteLOL...and so much harder to find.
ReplyDeleteMorning All
ReplyDeleteFor those of you who have had steroid treatments, I will be talking them orally, did you get improvement? And if so was it 100% & how long did it last?
Hi, Tammy,
ReplyDeleteSteroids performed differently each time I took them.
Flareup #1: I first had Solumedrol, then oral prednisone for a month. It took three months from the onset of symptoms to recover and return to work. I don't think either steroid did much for me MS-wise. But oral pred did help my breathing problem, I had an upper resp virus that made my airway snap shut. Total MS recovery was 75%. I permanently retained foot-drop and fatigue.
Flare #2: I took a ten-day taper of oral prednisone. It did nothing. Symptoms stabilized after 4 months, but I retained more fatigue and leg damage and hand damage.
Flare #3: After six months of constant flares, I took a 20-day taper of oral pred and my symptoms immediately smoothed out. The dizziness resolved, but I retained more leg and hand weakness, spasticity, fatigue, bladder urgency/frequency. Went on Soc Sec disability permanently.
It is hard to say whether oral pred will help you. But if it does, I think you should be able to tell within the first week. For me, I never returned to baseline after each flare, with or without oral pred. Flares always left me worse off than before.
Hope this helps.
Kim
Wow, your one tough lady:) Did you have any major side effects? I just found out from the billing dept that the costs of IVIG & IVsteroids are the same. So I don't think I'll be able to do either.
ReplyDeleteDo you get the burns? I get that burning sensation & I don't know what to do, it sucks. My Dr mentioned Neurotin but I don't have anything yet.
Thank you for your imput & hope your day is going well.
That doesn't sound right. You have insurance, right? I had IV steroids with insurance and didn't pay a penny!
ReplyDeleteAbout side effects of IV steroid: I had many unpleasant ones. I grew a mustache and sideburns, my face and stomach swelled up, I gained weight, my appetite tripled, I had an itchy dermatitis, smelled bad, and had hostile mood swings at first. But, everybody responds differently.
I saw my neuro today. Adding flexeril and getting an EMG. I've developed spondylosis recently, a spine degeneration not related to MS. It's worsening my foot drop and leg/hand weakness, and causing wasting in my hand and leg. The EMG will tell him whether these symptoms are MS-related or spine-related.
Fun-fun!
Kim
Oh, about the neurontin. I asked my doc about it today, and he said there are studies that were suppressed that proved it did not outperform placebo. He said he could write me a script for it, but I declined.
ReplyDeleteThere are other pain meds to try: dantrolene and carbemazepine are two. If you decide on neurontin, let me know how it works for you, okay? I'm sticking with baclofen and flexeril for now.
Kim
I take flexeril & topamax at bedtime & vicodin during the day, but sometimes that's not enough.
ReplyDeleteI had such radical muscle spasms & twitches the other night I'm surprised I didn't wake up on the floor:)
I guess my insurance sucks, they told me today they don't even recognize IVIG as a treatment for MS unless steroids & other treatments fail multiple times.
Have a great night
Hi, tammy,
ReplyDeleteI do have burning pain in my thighs at night, and some cramping. I don't think Flexeril is doing anything for me. I'm going to increase my Baclofen dose and see what happens, it seems to be more effective than Flexeril.
Are you sure about the IV steroid cost? I've consulted Lynn about this, and she was wondering who your insurance company is. Have you talked to them at length about this coverage? $5000 sounds like a total copay over a certain period of time. In that case, when you have paid that amount for services, then they cover $100%.
Just wondering.
Kim
I have talked to them several time just to make sure I was understanding completly. They told me my cost id $5000.00 then they would pay 100% after that. I only wish i had 5k. I was also tols that they don't recognize the IVIG untill you have several IVsteroids that don't help.
ReplyDeleteI'm waiting to hear from my DR to see if I can get an oral steroid, hopefully Monday. Yhe Flexeril is no longer helping my muscle spasms, cramps. I was in tears last night it was so bad.
My eyes have been twitching & I had this buning that started at the corner of my eye, moved across my face. The eyes have been twitching for about a month, but this is the 1st time I've had this type of burning in my face. I can't even explain the burn but I'm glad it only lasted about 15mins.
I just don't know what else to do, but I'm glad for this web page. Sorry for going on, I hope everyone has a great weekend, I think I'll go see Ironman II.
Hi All, hope everyone had a great weekend & are feeling good. Well tomorrow I go for a 5day IVSteroid treatment & I'm really nervous. I was told the oral steroid would be to hard on my stomach.For the last week I've had what they are telling me is the MShug & really bad double vision in my left eye. I sure hope it helps.
ReplyDeleteAny of you watching the Lost series finale tonight? I just wish it wasn't on till 11:30. I think they should have started it about 7:30 for those of us who get up early:)
Hi, Tammy,
ReplyDeleteDid they tell you to take Prilosec along with oral prednisone? Prednisone will rip up your stomach lining. I had to take a prescription proton pump inhibitor along with pred and it worked well.
Try not to worry about the infusions. Most everyone experiences some side effects, but nobody can predict which ones you'll get. Write them down as they occur and tell your doctor. Check back with us, too, if you are really wigging out and need a reality check, okay?
I stopped following "Lost" last year, so I have no idea where they've all ended up! With all the time shifting, have they jumped back before the plane crash? Oy, what a tangle of plots and subplots!
Kim
Not only are they jumping forward & backwards in time they started jumping sideways. I'll let you know how it ends. I will take a Zantec about an hour before. I think the thing that bothers me the most is they say it causes anxiety. I'm prone to anxiety, I guess we'll just have to wait & see.
ReplyDeleteI was afraid of the LP & that was a piece of cake, I also have a friend who has MS that will go with me. I think this may help her. She is refusing any treatment right now.
Tammy
Hi all,
ReplyDelete1st day IVtreatment sucked, small vains, to concentrated so caused pain and a rash. They had to dilute it big time which was better. I got a real bad headache that lasted till my second infusion today I drank tons of water had a big lunch and they moved the iv again, much better. I've noticed several symptoms improve & a few disappear:)
3days left, but I dont think I'll ever do this again. Watching idol, voting for Chrystal.
Hi, Tammy,
ReplyDeleteSounds like you had some challenges! It's a good sign that you are already feeling some improvement.
I hope you'll continue to improve. Please keep us posted.
Kim
One more day to go, other then the headache & indigestion i'm impressed My coworkers can't believe the difference, Ihaven't tripped in 3 days:) I would say there has been an 80% improvement.
ReplyDeleteI have several friends that had the same results, I hope it last. My Dr should start me on the Copaxone whenI see him on the 14th, I'm keeping my fingers crossed.
I've heard it can be hard stopping the steroids without a taper but they won't give me one. At least we have a 3 day weekend
Hope you all have a great Memorial Day weekend.
Tammy
Yea finally finished my 5 day treatment, hate the indisgestion!!!! Now we'll see what improves. I think I may have already mentioned my co-workers notice a difference, my eyes don't droop & I've only stumbled once. I guess the next few weeks will tell.
ReplyDeleteWell In my town it's Mules Days this weekend, big time event, kind of sad when that's our excitement. I think I'll stay inside & hide from the crowds:)
Tammy, glad to hear you are feeling some improvement!
ReplyDeleteHope you are taking an acid reducer for that indigestion.
Please do keep us posted on your progress, dear.
Kim
Hi Kim,
ReplyDeleteIndegestion is getting better but my muscles/bones joints or whatever is extremely paainfull. I feel bruised & beaten. I also have an embarassing place where blood is almost seeping out of my skin.
I hope this goes away soon. On the brighter side my husband caught a 10lb rainbow trout today, should have been mine:)
How have you been feeling?
Hi, Tammy,
ReplyDeleteI'm feeling better now that summer has brought back the sun, the warmth, and the gardening chores. My backyard is exploding with roses and clematis. My weak legs don't let me do very much all at once--I've fallen twice already trying to weed from a standing position--but I pace myself and do what I can.
Feels good!
Hi Kim,
ReplyDeleteJust got back from my DR'S appt & finally got my diag. Not that I'm happy to have MS, just to have an answer. He wanted to do another test & I said no. Enough tests, I've been tested for everything & all tests were negative. I guess I now I just wait till shared solutions contact me regarding Copaxone.
How are you feeling? Are you still working on your garden?
Tammy
Hi, Tammy,
ReplyDeleteSorry to have to welcome you to the club--but it is oodles better to stand in the diagnosis spotlight and start polishing your routine than to hang around in the green room waiting for your cue to go on stage. My lines! My lines!
Copaxone will be a novel experience for you--and the nurses will not let you twist in the wind, they are a good resource.
Let me know if you have questions, I took it for over four years. We might have very different reactions to it, so I'd like to hear from you when you start injecting. Fun, fun!
As for me, I am under-dosing with Baclofen so I can walk. Besides the back and leg cramping, I have a new symptom: a burning/throbbing/stabbing pain in the left thigh--and, the whole thigh feels bruised, I go through the roof if it is only lightly touched.
Despite all that crap, I garden every day and push through the discomfort and weakness. Darned disease, I spit in its general direction!
Just gotta tough it out to have a normal life I guess. Looking forward to hearing from you again.
Kim
Hi Kim,
ReplyDeleteYou just gotta love it, a surprise around every corner. Sorry your dealing with all that crap. Hope you feel better soon.
I have a question, my neuro is sending me to a Neuromuscular specialist. Is that common?
You are so full of info so I figured if anyone knows it would be you.
Tammy
Tammy,
ReplyDeleteHmm--why are you being referred to a neuromuscular doc? They treat peripheral diseases such as ALS and Muscular Dystrophy. Nothing to do with central nervous system autoimmune disorders like MS.
Did your neuro tell you why he's referring you? Beats me!
Kim
I was a little confused myself. When I left his office I assumed I was going to an MS specialist. I talked to his office and the notes in my records said he was concerned about some of my weird sensations. He says I'm a very complicated case.
ReplyDeleteI see my reg Dr next week, I'm going to ask him. He knows more then all these other DR's put together.