"working diagnosis" MS!

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angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 3/1/2007 4:28 PM (GMT -7)   
Hello everyone,
Blessings to all of you and thank you for your warm welcome. From everything I've read from all of you I have to say that I am suprised as to how quickly my diagnosis is moving. Monday I saw the neurologist who seemed like he was leaning towards MS from my symptoms and MRI results. The Lumbar puncture wasn't scheduled until the following monday but I called him on tuesday because it felt like my symptoms were getting worse - had a small bladder accident and increased numbness in my right foot (already had it in my left foot) also my ability to think is really bad. Can't drive because I'm so dizzy can't priorotize having a hard time spelling. Anyways, my neurologist told me to go the ER and have the spinal done there. They did and spoke with my neurologist and told me that the "working diagnosis" is MS. Even though they haven't gottne the reesults form the spinal tap yet. They gave me a shot of steroids?? and they are also sending a home nurse to my house for the next 4 days for more shots of steroids and my husband said something about some other immune system drug that I know NOTHING about. This is really weird. This is all happening so fast and I don't see the neurologist again until wednesday. I'm kind of freaked out about having these steroid and other shots especially because of everything I've heard about diagnosis taking awhile. I guess my neurologist must be pretty certain. They say that the steroids are to keep the inflammation in my brain down. Should I be getting asecond opinion? I mean I can barely think right now and the thougght of even how I am goingn to deal with my insurance compnay and finding a new doctor keeps me from not even being able to get out of bed. How do you with small children cope with this disease? I have an 18 month old and a three year old and our little famliy is out here in LA alone with no family and very little support. My husband has had to take a week off of work and like I said I'm not driving. We've had our kdis in daycare which is really expensive and they've been spending alot of time with the neighbors because I haven't been able to take care of them. Do any of you have any sage advice or wisdom or even know of any resources for support in the LA area? Sorry for slamming you all with all of this at one time. It is all happening so fast. God Bless you all!! Love, Angie

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/1/2007 4:49 PM (GMT -7)   

I'm very sorry that this has happened to you, and so quickly.  A diagnosis of MS can be based on just clinical signs -- all those things going awry with your body  --and either an MRI or a spinal tap,

so since you've already had the MRI, and clinical signs are increasing, it seems reasonable for them to give you a "working diagnosis of MS".

The steroids are an appropriate treatment for an "acute exacerbation" -- for a patient with symptoms that are worsening and intensifying, like yours are.  They are given to reduce the inflammation on the surface of your brain -- the myelin covering -- which is what is getting destroyed in people with MS.  The good news is that they think you're well enough to be able to get this treatment at home, with the support of a home health nurse.  Sometimes folks are hospitalized to have this done.

There are several medicines that could be prescribed for you for the long term -- those "immune system drugs" your husband heard mentioned.  They are Copaxone, Rebif, Avonex, or Betaseron -- often referred to on lists like this as "CRABs", from the first letter of each drug.  Rebif, Avonex, Betaseron are all interferon-based drugs. Copaxone is not.  All of them are designed to modulate your immune system -- not suppress it or excite it, but try to get it to stop destroying the myelin (which is what is happening when you're having a flare, or exacerbation).

You're in the Las Vegas area? You should look in the phone book for the National Multiple Sclerosis Society -- there should be at least one local chapeter in your area, and they might have ideas about help for you until you're over this current flare.  Or you can go to their web site, www.nmss.org .  I think there is a way there to search for local chapters.

I can't help directly with your children, as I don't have kids.  But I do know that lots of folks with MS -- when they're not in the middle of a flare, like you are -- go on to raise their kids, live their lives, and do OK.  You will, too...but first you have to get past this flare.

Your husband should ask at work if they are required to adhere to the Family Medical Leave Act (I think there are some size requirements -- a company has to be of a certain size before they're required to abide by it). What this act does is allow your husband time off work -- without pay -- to care for you and the kids, without jeopardizing his job.  There are restrictions on how he can use it -- using sick leave, vacation, that sort of thing first, then FMLA -- but if it's available to him, at least it would ensure his getting back to work without any problem.

You're certainly able to get a second opinion.  But from here, it sounds like you're getting good care, and what your doctor is offering is appropriate for someone with MS.

Again, I'm sorry this is happening to you.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/1/2007 4:52 PM (GMT -7)   
I went back and read your first post -- you said your pastor was with you when you first saw the neuro. Now would be an excellent time to reach out to the church and see if the pastor could find some folks to help your family, if only for a couple of weeks until you stabilize. That's the sort of thing church groups LOVE to do -- take care of the children, cook meals for your family, tidy up, even spend time with you. But you need to ask!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 3/1/2007 4:59 PM (GMT -7)   
Hi angie and welcome!
 
I'm sorry for your diagnosis but you will become acclimated to all the weirdness of this disease.  Be sure to ask for hepl and accept it when offered.  Pace yourself and rest when you can.  Try not to take on more than your body allows.  Keep a daily log of your symptoms so you can tell your doc about them.  The immune system drug might be IVIG which is in IV form.  Normally the steroids for ms are given by IV.  I've never heard of a shot of steroids that would work for ms.
 
Take care and hang in there! :-)
Michelle ><>
Co-Moderator MS forum
 
Happiness is not a destination but a day-to-day journey..


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/1/2007 5:29 PM (GMT -7)   
shellypoo said...
Hi angie and welcome!
 
I'm sorry for your diagnosis but you will become acclimated to all the weirdness of this disease.  Be sure to ask for hepl and accept it when offered.  Pace yourself and rest when you can.  Try not to take on more than your body allows.  Keep a daily log of your symptoms so you can tell your doc about them.  The immune system drug might be IVIG which is in IV form.  Normally the steroids for ms are given by IV.  I've never heard of a shot of steroids that would work for ms.
 
Take care and hang in there! :-)

Hi, Shelly. Yes, there are indeed shots of steroids that are given to help reduce the inflammation. ACTH is one such drug used. It fell out of favor for awhile, but is back now and being used more often. And there are others too. Usually the more heavy-duty drugs like you mentioned are given by IV. Sometimes even they can be administered at home, by home health nurses, but more often they're administered in the hospital.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/1/2007 5:30 PM (GMT -7)   
Hey Angie

Wow...i'm sorry! U'r going thru a really rough time right now an i can feel u'r frustration and fear. Just hang on and know this will pass in time. The steroids may make it pass faster for u too. Uppity did an excellent job covering everything for u and i agree emphatically with her on all points. Also, on the church thing...many times churches will have an organized 'group' or department that is ready and equipped with enuf people to do just what Upptiy is talking about. U'r pastor will know and be able to organize the support system u need...but do as Upptiy said and call on them. They'll want to help. Until u'r more in control of this situation u'll need the help...and down the road u may need it again, so building this relationship could be especially helpful to u and u'r family. Who knows...u may also get the chance to return the help to someone in the church later on!

I'm so sorry so much is happening so quickly for u, but in a way it's good that u'r not going to be stuck in limbo so long maybe. I can tell u it's no fun not knowing what's going on...but it's no fun knowing either. :( Hang in there and lean on us all u need and like. We'll be here when u need us.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 3/1/2007 5:43 PM (GMT -7)   
Hi Angie/ Uppity,
I certainly didn't mean to imply your doc was giving you the wrong shots or anything!  Sorry if it came across that way.  I had just never heard of steroids by injection helping a flare.  I understand there are many different injections of drugs.
 
Take care Angie and I do hope you feel better soon. :-)
Michelle ><>
Co-Moderator MS forum
 
Happiness is not a destination but a day-to-day journey..


MSBLESSED
Regular Member


Date Joined Feb 2007
Total Posts : 70
   Posted 3/2/2007 9:56 PM (GMT -7)   
Hello and welcome Angie,

First know that my prayers are with you. Second, stay in The Word as much as you possibly can. He will give you peace and wisdom in any situation. He never gives us more than we can bare. I am also a newbie to the disease (diagnosed in Nov 2006) and have received great support from my church. They have been awesome, but nothing like the peace that He can give. You've been given some great advise as far as resting and pacing yourself. The MS Fatigue Monster is constantly attacking me, but there is no weapon formed against me that will prosper. I know you'll be fine. I read the first line of your post where you started off...Blessings to all... and it was clear you joined this forum for a reason. There are no accidents. If you need additional support feel free to check my profile for my personal information and contact me via e-mail directly. I'm in Sacramento, but have friends in LA. I also love researching so I would love to assist you any way that I can. This site is awesome and there are people who are willing to share information with you and have been EXACTLY where you are at this moment. Just log on. We are here for you.
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