New to MS - How long can a relapse last with steroids and when to be concerned?

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katpsu94
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/7/2010 8:51 PM (GMT -6)   
I'm recently diagnosed with MS and the earliest app't I could get with a neuro is end of March. In the meantime, I am left with all these questions. I went into the hospital on 2/14/10 with numbness of my face and blurred vision. They gave me 3 day of IV steroids and sent me home. I started getting tingling in my hands and numbness in my arm, so I went back into a different hospital (one that had an actual neurologist) and they repeated 3 days of IV steroids and then gave me prednisone to taper off at home. They gave me 3 days each of 6 pills - 5 pills - 4 pills, etc... So I am down to only 2 pills a day. Until today the numbness in my face has been exactly the same as when I left the hosptial. Today, it's very slightly worsening, only because I can now feel it below my nose - around my lips more and a little bit in the back of my throat feels weird. Is this because I am tapering off the prednisone? Is there any reason I should be concerned? I kind of thought once I was done the  predinsone the relapse would be over, but then I read on the Internet that relapses can last months. I'm not in any pain and my face isn't drooping or anything, you can't tell, so I'm back at work full-time and going about all my other activities just fine. I guess I just want somebody to tell me this is perfectly normal and just keep hanging out until the symptoms go away. If something new were to happen like my leg were to go paralyzed or something I'd go to the ER, but since it's barely a difference and it's still just my face, I assume it's okay? The neuro that I can't see until the end of March will not take my calls until I've actually met with him (I'm not officially his patient yet) his service just tells me, if it is a medical emergency, have the neuro on call at the hospital paged or go to the ER.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 3/8/2010 6:41 PM (GMT -6)   
Hi kat,
 
I am sorry to hear of your recent diagnosis.  My neuro said I don't need to go to the hospital unless I can't care for myself.  I hate the hospital and was very happy to hear this!!!  If I flare, I call or send an email.  My doctor orders the steroids and I do them at home.  I don't do the steroids unless it is a REALLY bad flare.  My neuro told me (you may want to check with yours on this) that once we experience symptoms of a flare, the entire damage has already been done. It may take a while for the full extent of the damage to reveal itself.   The steroids only help you to feel better.  The steroids won't actually treat the MS itself.  I don't love those steroids so I avoid them if I can. 
 
I do just what you described; when I flare, I go about my usual business just as soon I as feel well enough to do so.  I lost the vision in my right eye in October.  I missed a few days of work but as soon as I was used to it, I returned to work.  My vision eventually returned after a few months.  Meanwhile, I just tried to ignore it. I did get used to it faster than I thought. 
 
Were you dignosed by an ER neurologist?  I saw that neuro until I got my second opinion from an MS specialist.  You may want to look for an MS specialist.  Many general neurologists aren't current on treatments for MS.  Good luck! 
 
Feel free to ask any other questions you may have.  I know I had a ton!!
 
 
 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 3/9/2010 6:43 AM (GMT -6)   
Very Good morning, Cat:
 
I agree with Gretchen.  If I were you...I'd contact your state MS Society for a refferal to a MS specialist neurologist.
 
I have been DX'ed for 22 years...And I see a neuro who's only practice is MS.
 
Great luck.  Johnturn
DX'ed June 21st, 1987
 


katpsu94
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/9/2010 8:29 AM (GMT -6)   

Thanks Gretchen and John!  Gretchen, that's exactly how I feel about the steroids. 

I went in to the ER because my face was numb, and my vision just slightly off, but I wasn't in pain and really could have just ignored it and gone to work the next day. But since I thought I might be having a stroke or something, I went into the ER.  They immediately put me on the steroids without really explaining anything to me, told me it was standard protocol.  The doctors at the hospital just kept telling me that the neurologist would explain everything to me. 

The neurologist on call is the one that diagnosed me - based on MRI results (5 brain lesions) and spinal tap results and the fact that he thinks a funny vision episode I had in 2008 was actually my first episode (I didn't see a neuro at the time, saw an eye doctor who saw nothing wrong and it went away on it's own after about a month).  He showed up a day later and spent only 5 minutes with me.  He pointed out the lesions on the MRI and said it looks like MS.  Then he just sent me home said "Don't google anything, don't worry, I'll see you in my office in a week" and told me I could go back to work the next day.  He failed to tell me what to expect from the steroids (I felt GREAT when I left the hospital, I was "euphoric" then hit a wall the next day) so at home, I thought the effects from the steroids were actually my "MS episode" getting worse.  I've never felt so bad in my life.  When I tried to call him, he was quite rude, and honestly I could barely understand his accent.  He recommended I go to Johns Hopkins since they have a neurology floor and people with MS as their specialty (not one of his specialties apparently).  It was clear he just wanted to get rid of me as he had determined I was going to be a whiner. smile

So I went into Johns Hopkins where they treated me with another 3 days of steroids and this time gave me prednisone to taper off at home.  But the only symptoms I had was a numb face, slightly "off" vision (hard to explain - sort of a halo/flashy thing going on), and some tingling appendages.  They never said that the steroids was an option.  I assumed that the steroids was necessary to stop the flare-up going out of control and paralyzing me or something.  I didn't understand why when I left the hospital, my face and vision were exactly the same as when I first went in.  So I ended up missing two weeks of work because of the steroids, not because of the MS attack.  So, now I realize, if I had known I had MS and this was just another flare-up, I would have never gotten the steroids and just would have continued my normal activities.  I wouldn't have missed two weeks of work (and now everybody knows there's something up). I guess it was good in that I at least got a really quick diagnosis, got all my MRIs, spinal tap, etc.. done while I was in the hospital.  As far as getting a good MS specialist - so I found one that is very well recommended at Johns Hopkins and was able to get an appointment the end of March.  It seems like a long time to wait, especially since I have a million questions, but everybody tells me I was really lucky to get an appointment with this guy that soon. So, if he's that good, I guess I'm willing to wait. I'm a little worried about not starting treatments for a while (even after I meet with this neuro, I understand it's a long process) - I mean, what if I have another relapse and it's a bad one that could have been prevented had I taken the copaxone or whatever? 

Funny - I had a nightmare last night, that my arm went numb and my Mom insisted I go to the ER.  When I showed up, my arm was just tingling and I told the doctor that I thought it was okay, and would just rather go home.  She insisted I have the IV steroids.  I told her I would sign something that said I was refusing medical treatment because I did NOT want the steroids. She wouldn't let me!  Strapped me down and put the IV in my leg (for some weird reason) so I couldn't move.  I was really mad. smhair


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 3/9/2010 6:40 PM (GMT -6)   
This is a great post!  I feel so informed now.  Thanks for sharing. 
 
So the first thing you need to know is, ALL of the MS treatments take months to start working.  NONE of them stop MS progression, they only slow MS down.  They work....sometimes.  I hate to be negative, but I am trying to put your mind at ease about the time it is taking to start a treatment.  None of them are all that great.  Many many people opt to not take MS progression therapies. 
 
You definitely don't have to take the steroids.  Isn't that peace of mind?  I think so.  The other good news is, for most people, MS is a slow disease.  It probably will be for you as well.  You might never have significant disability.  You might just have that irritating numbness and tingling. 
 
They are making a lot of progress in the world of MS.  Try to hold on!!  Keep hope.  Stay postive.  Live the healthiest life you can!  Get on an exercise program and stay on it.  It should include aerobic, strength and flexibility aspects.  Eat the best, heatlthiest foods you can.  You know what that entails, low fat, high veggie and fruits.......that sort of thing. 
 
I am glad you have found an MS doctor.  Hopefully you will like him/her. 
 
Please DO read up on MS.  Even if that means reading on the internet.  I have a few favorite books.  The Idiots guide to MS is a good one.  So is MS and your Feelings by Allison Shadday.  Keep posting!
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


hjaimej
New Member


Date Joined Apr 2010
Total Posts : 1
   Posted 4/1/2010 5:46 PM (GMT -6)   
Hi Cat!

I have been diagnosed since Feb. of 2004 and pretty much agree with Gretchen. There are no guarantees when it comes to MS. There are some people who do really well with a medication and others who do not. Some people progress quickly and others don't. None of us are exactly alike, even though we have similar symptoms are stories.

In regards to the steroids, the side effects suck, but they do their job. An MS flare can go on for a long time and although the steroids won't stop any progression, they can help to stop the attack, or at least slow it down. I guess what I am trying to say is that you will need to determine how bad the MS flare is and if you feel the side effects of the steroids are worth it based on how you are feeling. I have had both situations where I have decided not to take the steroids and other flares where I wanted steroids, no matter what the side effects are. As a matter of fact I just had the worse flare I have ever had and the steroids did wonders for me. At first they thought I was having a stroke because it hit so quick and all of a sudden I was unable to walk, talk, do anything....they did steroids and although a month later I am still having a bit of a hard time I was back to walking with a walker (that, severe fatige and numbness are the things I am dealing with now) and talking within a few days. I am still using a walker, around the house a cane, but I am not sure I would be able to do that without the steroids. Having said that I have also had flares where I did not take the steroids and got better in a week. Ultimately you have the RIGHT as the patient to do what feels right to you. Ultimately you are in charge of your own health and your best advocate.

Don't worry about offending a doctor, no matter what other people say. If the doctor is a good doctor they will welcome any questions you have and have empathy for your situation. Also, be educated. Make sure you are aware of what your options are and do your research. That way you can make an informed decision. Be prepared for your appointment. Educate yourself so that when you do have your appointment, or next appointment (as I think you said your appointment was end of March) you have your questions ready. Things can change rapidly with MS and so there will always be questions. Get involved or at least get information from your local National MS Society as well as other agencies that are out there....MSAA, etc. Keep a journal or some way to get out what you are going through and read books about MS when you are ready. I know at first it can seem like information overload and that can be difficult but the more educated you are the better you can deal with it. Do your best to be positive, although I understand there will be days that is hard. Also there is a large community of people out there who also have MS. I have a blog, that I will be the first to admit I am not as good about keeping up these days, but that is one way to be in touch. Not everyone will have the same experience as you but they will understand. Also, take what is said as what it is....what these people are going through and advice as it is unlikely they are doctors. Some of the suggestions may work for you and others may do nothing. My blog address is http://mymsjournal.blogspot.com and you can go there if you want for information and resources. I have put links to every organization I could find as well as the different drug companies, etc.

When it comes to the medications for MS it should not take too long to get it to you but it may take a long time to show a difference. What you pick at first, if you choose to do a medication, may not work for you or may not work for several months. Give it time. Your doctor should review your MRI and do another one after about 6 months on a medication to see if there is any change but the MRI doesn't always show everything so it's important to pay attention to what symptoms you have as well. The doctor will take into consideration all of these factors. If a medication is not working for you, you can always try another. There are people who choose not to take anything, that works for some people. Unfortunately you will probably not really know how you will do with your MS for a while. Doctor's research shows that the meds reduce the progression but there are some who think that diet and exercise also slows it. I tend to believe you need to find what works for you. Have a good combination of medicine and alternative care. Be open minded as this illness is unpredictable. What works for one person may not work for you but don't be scared to try something because it just may work. You may have a healthier life by trying something, even if it's not something you may have normally tried (like alternative medicine stuff...vitamin d supplements, acupuncture if you can afford it, massage, etc). Also I would agree with Gretchen about Allison Shaddy's book. Depression can be a real issue with MS and this is a great book to help you and your family understand what you are going through.

One last thing, when you are ready, talk to your family about what you are going through (or start a blog/journal and have them read it) because this illness will not only effect you but those you love. They will be scared for you, wonder if they can do something....they will have questions too. After about two years of my Mom not wanting to talk about it and being scared to death about what this means, not quite understanding MS, I convinced her to go to a talk with me that my doctor was giving for the NMSS. Between the talk and speaking to my doctor she felt much better. After that she was not as scared anymore and became more of an advocate. It takes time but it will be okay.

Take care and I wish you the best!

euqinig
New Member


Date Joined Apr 2010
Total Posts : 10
   Posted 4/24/2010 7:16 PM (GMT -6)   
Kat,
    I have an appointment at John Hopkins as well.  I didn't get an appointment until July.  I am looking forward to
going to John Hopkins.  I am told they are the best on the east coast for treatment of ms or transverse myelitis.
What is your doctors name and how did your doctors visit go?  I have a lot of burning and tingling in my legs.  Sometimes
it is very painful.  I also have been getting bouts of vertigo.  Not fun.  Please respond. :-)
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