Anyone have anything like this? I was diagnosed w/ MS Sept '07, but have pretty much been in denial. My symptoms were uveitis, slight numbness and tingling. Now after preg / nursing (ds born 3/4/09), I am having huge flare. Most of my body is numb, I feel pretty much paralyzed. Neurologist gave high dose of oral prednisone to try and control, but after a week, I just feel like I am getting worse. I hope this isn't permanent damage.
silver, congrats on the new baby! Unfortunately, this is not unusual after delivery. Your hormones are going nuts, and if a relapse was in your future, this triggered it.
Most docs will suggest you get on a DMD immediately, but you cant do that and continue nursing- so its your very personal decision what to do. I do know that no amount of oral prendisone will help....and the longer you wait, the better chance alot of this WILL be permenant. Why didnt he put you on IV Presdisone, which would be the smarter way to administrer it and give you relief?? The sooner you do that, the better chance you have of reversing this.
Are you seeing a Neurologist? A MS specailist? Sounds like time to get to one...its also time to get out of denial and start taking control of having MS. What you are experiencing isnt going to "just" go away...
I had a flare up after being pregnant as well. I ended up with Optic Neuritis two months after delivering my daughter, this was in 2006. I hear these flair ups after pregnancy are quite common. They only gave me advil and steriod drops for my eyes back in 2006, they didn't diagnose me as most likely MS until 2009. Currently I have good days and bad days. It seems whenever I get some type of illness for example a cold I end up feeling worse(burning sensation in legs and arms, tingling, twitches etc.) I have not started any DMDs. I do not know if I will start DMDs or not, this is a hard choice. I hope you feel better soon.
I find that Positive thinking, keeping busy and managing my anxiety are the best three things for me.
Hi Silver. DMD stands for Disease Modifying Drug. Rebif is one, yes....as are Betaseron and Avonex, all three of these are Interferons. Avonex and Rebif being the same drug (given differently- one subcutaneous and one intramuscularly) and Betaseron being a similar type of shot. Copaxone is also a DMD, but its not an interferon, its a different, synthetic drug- which reacts differntly in the body... newer along the line of disease modifying drugs is Tysabri, which is an infusion and NOT usually used as a first line of defense.
Yup, unfortunately, I think its time to start investigating this. Youve got a little one to be strong for...
Just out of curiosity, what strength of oral prendisone did he give you? im guessing it had to be more then a standard dose pack?? Thats usually 30 mgs, followed by 25 mgs, followed by 20 mgs and so on...
IV Steroids are usually 5000 mgs given one thousand mgs a day, for 5 days in a row. Im just curious as to how high they actually put you on, orally. Did it help at all??
I hope youre okay...and its a GOOD thing you are going to the MS center. Youll get the answers you need!
Ps. boy or girl??
He put me on 100mg oral for two days, 80 for two days, 60, 40, 20 , 10 -all for two days and 10 ever other. I'm on the second 20 today - and none of which worked. If anything, I would have expected the 100 or 80 days to have felt better, but no.
keep us posted..ok? That is a fairly high dose of oral...but no where near as high as it would have been had it been done IV. 80 mgs vs. 1000 mgs- see what I mean?? The good news is steroids can stay in your system up to a week, ten days: after you finish them....so maybe there is still hope.
I wish you well. Congratulations on your son! Boys are SO much easier!
So, I called my neurologist yesterday, he's out of office on Fridays. The other dr. in the practice called me back and agreed to put me on the IVSM. 1000mg/day for five days. A home care nurse came out last night to put in the catheter and show me how to do the meds. Pretty easy. I've had two of the five rounds, and so far not much relief. I'm still staying positive, waiting and hoping for the best Fingers crossed.
Hey Silver. IM glad to hear you got the correct solution. Id be really questioning your doctor about why he waited so long to do this. It should be the first line of defense for what you described.
Here is what you need to know. Steroids, given IV, can stay in your system up to a month, and they will continue working. Also, if you waited too long to start them, they might NOT work at all...unfortunately, they need to be started almost immediately. Lastly, the more often you use steroids, the less effective they become, so you only want to do this once a year or so- and only when its really important. Overtime, they actually arent good for you.
You start getting that lousy taste in your mouth yet? I hate that taste, and I always get it. Pepermint lifesavers seems to work....and the energy burst- by day 3, I cant sleep. I live on Ambien while doing IVSM. And, eating....hope you stocked up on low cal goodies! By day 4 you will be having perpetual munchies. You might also get some swelling in your face- dont react if you see it, it will start going down after you stop the infusions. another thing you should know is doing IV steroids lowers your immune system. Try to avoid being around anyone with cold or flu like symtoms for the next 12 days...
As you will see, doing them IV is not like doing them orally...big difference. However, it also should give you some relief. Let us know, okay??
I usually do mine at home too. I always feel bad for the people who have to go to the doctors office or hospital to do this. Its really not hard to manage at home. let us know how you make out...and Ill be sending you positive vibes!
Thanks, Nikki. I did get tahta AWFUL metallic taste...yuck. But yes, peppermint Lifesavers do help.
I am really concerned about being numb forever. Which sucks. I really hope this wasn't done too late. I'm not trying to stress about it, but it's hard not to think about, when I can't even hold my 11 month old
Well, they give 5 doses for a reason, so let's let them in and hope they work. BTW - what's the next line of defense if this DOESN'T work? Do you know?
Thanks for the advice. It really does help. I appreciate it.
Im sorry Silver. I know you are scared. Unfortunately, there isnt a next line of defense. With inflammation, the idea is to shrink it as soon as possible- and hope that you get it in time. Even over the next few weeks to months, its possible that it isnt permanent and the nerves will regenerate themselves. I do know how scary it is.
I woke up 5 years ago with numbness in my hands and fingers. Not knowing at the time that it was neurological (thinking it was carpal tunnel or a pinched nerve) I wasnt put on Steroids until a month later, my MS dx was confirmed by then and it hadnt gotten better on its own...by then, it WAS too late. Ive had numb left hand and fingers for 5 years. Numb is a stupid work though...its not numb. It hurts like the dickens I feel tingling, burning pain all the time, which worsens with humidity and moisture (rain). Ive learned to live with it and sometimes, even forget it.....but its always there.And, I cant tell you how many times Ive burned myself!
This is part of why I get so angry at these docs who dont immediatley order the IVSM. In my own experience, if you start it immediately, it DOES help. Ive had a few bouts of ON since that initial time frame and its always calmed it down and restored my vision. But taking them orally does absolutely nothing.
what you need to do is exactly what you are doing. Try to be optimistic and do not stress- it makes it worse. You will probably see improvement over the next ten days- I pray you do. And, overtime this will all become a distant memory. Just do what you can and try not to worry too much. Others have suvived MS and pregnancy issues- you will too, even if it makes things alittle challenging at times.
Quick question - What kind of taper down dosage do you normally get? I am concerned that I was under prescribed.
He gave me 80mg for 2 days, 60mg for 2 days, 40mg for 2, 20mg for 2, 10mg for 2 and 10mg every other day. That does NOT seem like enough after 1000mg IVSM. I hope I'm wrong but, I have a bad feeling about this. I do NOT want to get sick.
Silver, you caught me online. Thats actually the correct taper down. No worries. I actually dont do it. By the time Ive done that much IVSM, I cant stand the thought of staying on it any longer! I go cold turkey.
But, yes, thats the right amount. You could actually do less. 50 mgs followed by 40 mgs, followed by 30 mgs and then 20 and then 10...and you would be okay too. He actually put you on a high dose for tapering, but its an OK dose to be on. With this dose, you will not feel the effects of coming off it.
Youre in good hands...
let me know how you are feeling??
I've been feeling ok. Did the last IVSM this a.m. Not feeling too much relief as of yet. But am not feeling worse either. I find that resting helps the fatigue. And since I work at a pc all day, but the end of my 8 hrs, my right hand is just so stiff / numb. And you're right from a few posts ago - numb is a stupid word, because it's anything but...it's tingly, hot, cold, burning, swollen-feeling, *****ly - all at different times. But mostly it's so very annoying.
So, how do YOU feel? All this about me, and I've never thought to ask about you. Hope all is well.
Thanks again for you're continued guidance and support.
Silver- youre welcome. Im exhausted! Thanks for asking. Working 60+ hours a week, going to school at nights and taking care of my family has me utterly shot. Im not doing myself any good trying to do so much and I know it, but right now, Its all about survival. Husband has been laid off forever- and Im trying to hold things together.
Feb 17th is my next MRI and 2 weeks later follow up with my doc...so, we'll see if anything changed since 6 months ago. He'll yell at me to slow down, Ill argue that its impossible- and life will go on.
My only real pain is my hands/ fingers...and Im dealing with some back issues right now...but mostly, I just ignore the pain and soldier on! Ive been trying to get to bed by 9 every night, and up by 6:30. Ive even dedicated myself to working out 1/2 hour a morning every morning and truthfully although Id much rather get that extra half hour sleep; Im glad Im doing it and its helping everything from my balance to my thighs! we go on vacation mid march and I want to be bikini ready!
Youre very welcome for the advice. Im glad to hear that you arent feeling any worse for the wear and yes- do the taper down because it will help you get back to yourself...and let me know how youre feeling. It might take a few days to truly feel any difference- but it will help.