New to MS

[Jcoleman316]

Wow. Im so thankfull for this forum. Thank you for such great advice and info. Hopefully all of you feel better days.

[Sir-Voor]

Hi Jcoleman,
After reading your post I now realize that my refrigerator going out, bad case of the flu, 14yr old dog weak long death holiday week was not as bad as it could have been.
Hopefully once you learn more about MS and how to manage it, things will look better in hindsight.
Right now you need to focus on recovering for your attack.
The 3 day IV treatment is to reduce inflammation, and you can start/boost that on your own.
I recommend going an extreme anti-inflammatory diet until you feel better, then ease into an anti-inflammatory diet normal. The reason this is important is because inflammation is the main thing cause damage for lesions, plus inflammation of the blood/brain barrower allows more bad MS T-cells pass into the brain.
So for the time being eliminate sugar and imitation sugars, drink carrot juice, you can learn more at nutritiondata.com as to what to eat like switching from white potatoes to sweet potatoes strawberries instead of grabs.
Also go gluten free, it is not easy. But for many of those it helps it often is a major help.
Also spices are an important boost to and anti-inflammatory diet, Penzeys.com is my source. Nutritiondata.com can help you pick the ones more anti-inflammatory.
And whatever you can do manage your stress and get exercise will also help greatly.

[Sequoia]

For more information on anti-inflammatory diets and other nutritional approaches to living with MS, take a look at the "Tara's Nutrition & Supplement Notebook" forum.

http://www.msworld.org/forum/forumdisplay.php?f=70

[Jcoleman316]

Im so sorry sir-voor. Im a dog owner and would much rathet go through this week over again every other month then to loose my two 10 year olds. I started my 3 day iv treatmeant today and was able to get rebif for a year for free wich gives me a chance to recoop and make some money.....so thankfully i have support from friends , family and such good advice from all of you. I will be posting and reading these forums for a very long time. Now to work on a signature.

[0485c10]

STEROIDS--THATS ANOTHER SUBJECT!

Goodness, you are so new at this

steroids have side affects, most aren't expecting. it's ok once they understand it happens and can prepare for it. here are the side affects you should be aware of...

IV steroids can cause strong emotions, you may say things you don't intend and have to apologize after. Warn your wife that the steroids may make you very emotional and if you say you want a divorce while doing steroids or her butt looks fat in her jeans, you hate her mother or she's a terrible cook & you have been meaning to tell her for a long time---warn her in advance you don't mean anything you say while under the influence of iv steroids! or be prepared to apologize-grovel later.

steroids cause terrible munchies. you won't be able to control your self from eating, so put the christmas candy away and have plenty of low cal veggies to munch on...or something low cal.

steroids can cause insomnia, so plan on something to do if you aren't able to sleep. one possibility is to come to this board to find someone else dealing with insomnia, just have a plan of something to do--if insomnia happens to you. videos to watch?

IV steroids deplete potassium--so try to eat foods higher in potassium and lower in sodium while doing steroids--some possibilities pineapple, raisins, potatoes(without butter because your eating everything in site anyways and you want to save calories) and avoid salty foods while doing IV steroids. steroids can make you kind of puffy, the salt doesn't help.

steroids can cause tremendous energy, you become like the energizer bunny...between the insomnia and the energy some people have cleaned closets they have been meaning to do for years.

steroids can cause a metalic taste in the mouth during the infusion--i don't have that one but it is very common and people report they bring along some hard candy to suck on during the infusion for the metalic taste in their mouth.

steroid side affect build over time--you may not get any, you may only get a few & if you think after the first day you have experienced all the side affects you will get from steroids, you would be wrong. by the 3rd day your side affects will be at their strongest...ie. no insomnia the first night, no sleep the third.

I think thats it. The strong emotions were the side affect that took me by surprise, made me mad at the doc for not warning me. doc warned me to eat more postassium & avoid salty foods.

the insomnia got me pretty bad, by the 3rd of 4th episode of steroids i just began taking an OTC sleep aide if I'm still awake at midnight--OTC for me is Tylenol-PM, benadryl or an actual over the counter sleep aid, next to the stay awake aids at the grocery store..

The ?-PM's are just aspirin with benadryl(tylenol-pm). so you can go directly to benadryl for its sleep aid properties.

have something light in your stomach before you go for the infusion--not overfull not empty. some get an upset stomach during the infusion, because they hadn't eaten in a while. they just ask the nurse for some saltines and feel better.

good luck!

[Jcoleman316]

Extremely new lol. Im getting all those side affects from the first fusion. The insomnia is already here, its been here sense the attack, Whole left side vibrateing like a struck bell, cant ever be comfortable. But at thee same time it made the core of my body feel so much better.

I also cant wait to get my head back. Ive always been like an emotional rock. I had to be, my mother died when i was 16, dad got maried a month later,..i left, lived with 2 differnt brothers that diddnt work out because of my rebellion at the time. Left there and was homeless for 4 years. Addicted to meth for all of them, i brought my self out of that life with the power of my own mind. No rehab, no help.

12 years sober with a damn good life style ive built for myself. Grounding my wife and friends and always being able to bring them to ease and help them feel better about crappy situations. I wasnt a cryer,.or even a big laugher for that matter. But ever sense this whole event and especially the fusion yesterday, i cant talk about anything without a tear, and I absolutely hate it.

I was a strong believer that depression was for the weak minded, but have now realised that you truly cant control or help it when it comes. The funny thing we get a kick out of the mood swings im havingis the fact that my normal mood is a bad mood,..the ms made it swing to more careing lol, and the steroids brought it closer to normal (besides the obvious swings) Got a doc appt today, come on depression meds!

***Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.***

[0485c10]

That is awesome J.,

that you were able to kick a meth habit, the news media describes that it's not that likely to happen once meth is tried, your in a minority of people who have managed that and it's a pretty good sign that you are gonna have no difficulty dealing with this MS stuff.

but darn, it brings a whole other issue to mind regarding steroids.

there is an optimal for steroid use, use it when an exacerbation is affecting the ability to do life activities, but don't use it when the relapse has less impact on daily life activities and just wait for the body to reduce the swelling on its own--takes longer but steroids aren't used.

the negative of steroids is the weaken bones & teeth, and mess with a person's blood sugar. messing with blood sugar is pretty dangerous for diabetics with MS and i believe cause those mood swings observed with steroids.

steroid weakening bones and teeth, i would think would have a greater affect on someone who has already had meth weakening teeth in the past.

Plan an paying extra attention to your teeth because you will likely need to use steroids sporadically for many years to come.

i'm a middle age woman, so my calcium needs are in part do to menopause with MS...my doc advises me to take 1000-1200 units of calcium a day and 800-1200 units of menopause D every day.

the body needs vitamin d to absorb calcium, so one without the other isn't helpful.I use a multi vitamin which has the vitamin d she advises & and an extra calcium supplement every day to add up to what she advices.

My neuro did not recommend that, my PCP did. they have to work together on treating me. The neuro refuses to touch anything non MS and just refers me to my PCP(personal care physician--an internist for me)

then because i worry about my teeth, i brush 2x a day with an sonic care tooth brush and floss once a day. I use tooth paste for sensitive teeth because cold is beginning to hurt....any way there is a lot of fluoride in toothpaste for sensitive teeth and a dental hygienist advised me not to rinse my mouth out after brushing, she said leave the toothpaste on for the additional fluoride,...

it strange to do at first, then its just normal. first rinse your mouth out with water before brushing to get all the food particles out. then brush for 2 minutes then spit as much of the toothpaste out as you can,without water, then wipe your mouth with a towel. for any toothpaste on your lips. after you can taste the toothpaste in your mouth but after a while i don't notice it.

then i also rinse with act II fluoride mouth wash ever evening, i think that helps? you suppose to rinse 2x a day but i'm too thrifty to use it more than 1x per day.

i'm a a little late to be caring for my teeth so well, i didn't start doing it until steroids became a part of my life. the dentist always asks me how many time i have used steroids since my last visit....and because of cost dentist fist aren't often either. a person does what they can???.

steroids affected me by crying too. I'm not normally a crayer, at one point i thought emotional issues where more difficult because i did not have the release of crying...then those steroids WOW! I think i cried for 4 days solid! if i lost the ability to cry i found it in a big way with steroids!

I called the 1-800-fightms phone number to ask about ms. i cried through the whole phone call! My nose was running, my eyes were tearing, i was drooling out of my mouth, the crying could be heard over the phone, i apologized and said i'm not normally like this.

she answered and it was very helpful.."this is from the steroids, this is not you, this is the steroids"

that was when i found out steroids could do that & got mad at my doc for not warning me.

next relapse requiring steroids happened 4 months later, when my leg stopped working. I went to the doc, had to i needed to be picked up from where i was wen my leg stopped working--the person who came to get me was pretty adamant i see the doc.

he said 5 days of iv steroids. I answered no! you fooled me once but i'm not going to do steroids any more! NO!!!!!!

he really wanted me to do steroids, so he said i can give you steroids orally instead of by IV but i'm gonna hit you kind of hard with an oral dose.

i liked oral much better! the side affects build gradually not suddenly like they do with IV--a person has time to prepare for those emotions! Well that's it for IV steroids for me, if you want me to do IV steroids the answer is NO!

Some people get an upset stomach from oral prednisone & i think he was hoping that would happen to me, but i have a gut like a garbage disposal, it doesn't get upset by anything.

next steroids were with a new doc. i had optic neuritis and over the phone she ordered 5 days of IV steroids. I said no again, i want oral instead..so we negotiated, she said no oral, i said no IV, she said 4 days IV, I said no, she came back with an offer of 3 days i said no again, oral. this was all done over the phone with her nurse giving offers and counter offers. her final offer was 1 day of IV steroids.
i agreed to do that.
next time i saw her i told her i had an episode of depression and i kept myself from getting back into that situation by keeping my emotions on an even keel--and that doesn't happen with those steroids.

next time i needed steroids, she was out of the office and her partner ordered steroids. this time it hurt to move my eye so i was ok with steroid, hurting makes you change your mind about stuff, but i swear they put some type of tranquilizer in the bag with the steroids, i'm not so afraid of them now, probably won't need them again. that's the way it goes...

btw..there is no difference between IV steroids an oral steroids for anything except ON..with ON the ON seems to repeat sooner with oral prednisone than IV steroids. the theory speculated that he optic nerve lies entirely in the brain and needs a faster delivery system of IV that going through the the digestive system first as is done with oral prednisone--i think that was why she was so adamant i use IV steroids that one time? i've only had ON relapses, since the first 2, so she has never prescribes steroids for anything else and she has always prescribed by IV? perhaps thats the last of the relapses for me-so she won't prescribe IV or Oral?

Lynn

[Jcoleman316]

Today was my second infusion. I like the steroids actually. They make me feel different, wich is different than what the MS symptoms do. Wich is comforting. I get meds in a couple days so hopefully I can get my hand back as soon as i can.

I was weary about posting my old adolescent habits. But the experiences you been through really help you through life. And ive always used it as an extra push to achieve what i want. My wife and I have achieved quite alot.


P.S those old days have made me paranoid about stuff like teeth. Mine are well brushed.

[0485c10]

Sound like you had a temporary detour but already you found your way back to the path you were on.
much sucess, incorporating new things encountered on your path.
i feel like a fidelity commercial-"stay on the path"

(I'm also a fan of Lord of The Ring, all kind of unexpected things are encountered on the journey).

[lukeduke]

Welcome Jcoleman316. I am sorry you had to come here. MS was my Christmas present too. That was way back in 2006 though. I was not entirely new to MS, just to my having it. My mother has it as well. I am glad MS Lifelines is letting you have the Rebif for the next year. Maybe you will have insurance to cover it by then. I do know too though that they will help you if you still do not have insurance or have a high copay. I wish you all the best on this new journey.