What can I do?

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colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 5/1/2008 4:02 AM (GMT -6)   
I am having my first Ms excerberation. I was dx in 2006 and for a little over a month I have ben having the numbness/tingling over my face,neck,lips,hands,arms,and heels of my feet. I called to get into my neuro earlier,but only got into him a week sooner,but it was still two weeks away. He sent me for the MRI for lesion load and sent me for steriod infusion. The office staff farted around,giving me another week to wait while they "looked" for the pre-cert code for the steroid infusion. It wasnt until I called my insurance that the Dr staff got on the ball. My first infusion was yesterday,I go again today and tomorrow. I follow up with more oral steroids. This is just awful,it's constant. It's wearing me out,exhausting me at every angle. I cant take this anymore. I know I have too. I have two kids,Emily is 6 and Ryan will be 3 next weekend. Yesterday evening it got so bad when I went to check in on Emily at her friends next door(the women's house was waaay to hot)...I came home and suffered the entire night. I started experiencing the numbness/tingling down my neck and onto my collar bone and chest. It felt like a 300lb fat man sat on my chest. It hurt to breathe...I just dont know what to do...I mean is there anything else? I hate summer! I hate the warm weather! If this is what is to come...urgh


 
~Nichole~
 
Dx with Ulcerative Colitis September 2002
Dx with Multiple Sclerosis August 2006
 
 
 

Post Edited (colee1979) : 5/1/2008 4:12:01 AM (GMT-6)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/1/2008 5:04 AM (GMT -6)   

I'm sorry you're having an exacerbation (or flare).  Unfortunately the numbness and tingling are indeed a pretty common part of this disease.

Your doctor's office may be stalling a bit at the steroid infusion, as generally doctors don't like to prescribe steroids unless the flare is causing serious difficulty with things they call "Activities of Daily Living" -- being unable to walk (or only walk with great difficulty), having problems dressing, bathing, eating; bowel or bladder malfunctions; extreme weakness -- that sort of thing.  And they don't generally prescribe them for the numbness and tingling.  Why not?  Because there are major and serious risks to steroid use, and they want to try to help patients avoid those as much as possible.

You might ask your doctor about neurotonin, a medication that may help with some pain and sensory stuff (the numbness and tingling are sensory symptoms).

Heat is a problem for folks with MS for sure. If you do have to be out in it, there are cooling vests you can purchase. 

I hope you feel better soon.

 


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


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 5/2/2008 6:24 AM (GMT -6)   
Oh man, Colee, I'm so sorry too to hear of this flare... I'm kinda new around here and learning about these things and how to recognize them.
 
I know the numbness issue and the breathing difficulties you feel plus the heat... can you grab a cool shower when this happens? Will your hubby watch the kids while you chill down a bit? I have several numb areas all over my body... mostly my feet (it's hard to tell where I'm walking sometimes) and my upper facial quadrant and it feels really weird... but that breathing things gets to me too... it's like I can't get a good breath and then I find myself breathing shallow too much... I just try to find a comfortable position and a place for time out, get that cool shower when I overheat (which seems alot... worst than hot flashes!) ... I know it's hard with 2 kids those ages, but hopefully you can build in some breaks for you.
 
Uppity's right on about the steroids... they really should be avoided if possible except for super bad times as they're robbers of your important things like muscle control and lots of other important functions and usually steroids affect mood swings which will make matters feel worst too... really hope you're out of this flare soon.
 
 
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 5/14/2008 3:58 AM (GMT -6)   
Thank you both for your response...I have two days left of my oral steroids. I have been experiencing some tingling back again and now my legs have grown weak,mostly at my knees. I have taken a few nasty falls. Once down my stairs and once on my porch(during my son's 3rd birthday party),and a few minor trips/stumbles. I called my neuroligists office on Monday,he wasnt in the office. So I left a very detainled message for the Dr. Explaing the tingling has been creepy back and about my falls,also how my legs have been feeling. I was at a different Dr appointment yesterday when the neuro's office called back....so I call again,hoping to see him THIS week. Well,I have female surgery scheduled on June 12th,which I need medical clearance for(seeing my Family Dr today) and I explained that on Monday when I left the message and that my GYN doesnt want me to be on steroids for at LEAST two weeks prior. (It's an out patient surgery called Edometrial Ablation,because I have been having two periods a month for nearly a year now. They found a mass on my ovary and a polyp to remove,and with me being anemic my gyn says this is my best option. Anyway...sorry to side track). Sooo..I call them back and the "phone taker" told me that the Dr would only put me on higher doses of steroids and since that isnt possible he wants to cancel my appt for May 27th and reschedule for June17th! I said,well what do I do in the mean time? (I am completly shocked at this point)...she said to me.."You have MS,there is nothing we can do"....Uhhh Uhhh Ummm OK...Uhh Alright...um O K...So thats what I said to her. And hung up. Now this is not just some Dr...he IS a neurologist and I have been seeing him for over a year now!! I cried in disbelief for an hour..wondering what is wrong with mankind...and getting slightly bitter. I finally composed myself and called back. The same girl answered the phone. I asked her my name and she told me the name of the office again. I said "I know what office I am calling,I asked what YOUR name is,whom am I speaking with"? She told me and I proceeded to tell her that That office has failed me in major crisis. That I have been flaring for 2+ monthes and they have done nothing but give me more grief. It appears they cannot handle a patient with MS. I want every document,every file,bloodwork result,MRI..everything. I want it ready this week for pick up and to cancel ANY appointment you have for me. I will never set foot into your office again. SHE LAUGHED AT ME!! She stinkin' laughed at me! Oh that set my blood a boiling! BUT..what moe can I do,I am running from that office as fast as I can and I wills earch for a new,better Dr. One that can help me and that cares.
 
If this happened to any of you,what would you do?
 
~Nichole~
 
Dx with Ulcerative Colitis September 2002
Dx with Multiple Sclerosis August 2006
 
 
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/14/2008 5:16 AM (GMT -6)   
I'm sorry that she laughed at you. But unfortunately there really isn't much the doctor CAN do -- if you need to be off steroids to get your other surgery done, then you need to be off steroids. And as I said earlier, there really isn't much else he CAN do but give you steroids -- which you can't use at this time. They're not a real good option any time, and when you have other medical issues going on, they can really complicate matters.
What you're experiencing -- the numbness and tingling -- are part of MS and aren't always treatable anyway. When you find a new doctor, you need to address the falling down, though -- it is probably time to consider a cane.
...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 5/14/2008 12:29 PM (GMT -6)   
Hey Nichole

Wow...i'm sorry for what's happening here! I agree with Uppity, there isn't a lot that can be done as far as treatment goes other than steroids and with the need to be off them, well it's just a matter of getting thru this surg and flare i suppose. I"m very sorry.

As for the doc's office...i wouldn't just take it. I don't know that i'd leave either. As uppity said, they are doing what they can...BUT....i'd certainly let the doc know VERY CLEARLY what was said and who said it to u!! Maybe he won't have total control over who works there, but he can certainly make it clear to her that that type of behavior and patient treatment aren't acceptable! Maybe he won't do anything...and then u may want to leave the practice...but at least see what the doc says and how he handles it. Finding a good neuro isn't the easiest thing to do as i'm sure u know...so maybe just take a deep breath and rethink this a little. Don't let this one person drive u away!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Willowmom
Regular Member


Date Joined May 2008
Total Posts : 88
   Posted 5/14/2008 7:53 PM (GMT -6)   

Hey Nichole,

I agree that you should at least write out what happened and how you made it feel- no one should laugh at you like that.  Provide a copy to your neuro and the desk staff.  Do you like your neuro?  If so, maybe see what the response is.  But if you don't have a good relationship it might be time to move on.  Because I have an HMO, my neurologist is a migraine specialist.  But- he is a good and patient listener and has gone with my requests on occasion if I back it up with articles or clear reasoning for it.  Unfortunately, the ladies are right about the numbness and tingling.  It drove me nearly insane at first.  Comes and goes.  My hope is that it will settle down for you and not be a persistent symptom.  Sometimes mine feels like little burning ants crawling under my skin and I scratch at, well, nothing.  Klonopin helps a bit with mine, but especially with the tightness across the chest.  Part of that could be the MS Hug (lots of tiny muscle spasms I think) that squeezes across chest or waist or back.  The Neurontin someone else mentioned may help also.  I'm wondering are you on any of the interferons or copaxone?  If you hadn't started those yet, maybe this is a time to talk to your neuro about one of those. Hang in there.  Willow 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3531
   Posted 5/14/2008 8:59 PM (GMT -6)   

Hey Nichole,

I am sorry about all of this.  This is a humiliating disease and the last thing any of us needs is to be laughed at.  I go to a neurologist that is an MS specialist.  She only sees MS patients.  She is pretty realistic about numbness and tingling.  She says if it is not interfering with abilties and is sensory only, then she is not too impressed.  When function is involved then she wants to see me and talk about options.  There are no real treatments for a flare.  The steroids will help make you more comfortable, but they will not decrease any disability that may develop from the flare.  Apparently the damage has been done once that flare begins.  This is how my doc explained to me anyway.  Options for me were physical therapy and botox to treat spasticity and balance problems that are residual symptoms from flares.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 5/17/2008 7:01 PM (GMT -6)   
Thank you all...I guess maybe my Dr could hvae had me come in early in explained these thing to me,rather that have his rude staff say such harsh things to me. It isnt easy to hear those words "you have ms there isnt anything we can do"...I have just been getting more and more depressed snice then. I feel like there is little hope now. I have fired him,no more going back to him. I just didnt care for how this entire situation was handled,from the start. My Family Dr is helping me find someone new. I am currently taking Copaxone and have been from the start,when I was first dx in 2006. I would like to switch...but waiting. I am shaking like a jitter bug and my body is weak. My legs are sooo very tired,I am tired. I dont know how I am getting through my days. I just dont know. How do you all do it? I want to go to sleep and wake up when this goes away,and thats never...so what are my options here? Wonderful.


 
~Nichole~
 
Dx with Ulcerative Colitis September 2002
Dx with Multiple Sclerosis August 2006
 
 
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/17/2008 7:10 PM (GMT -6)   
colee1979 said...
Thank you all...I guess maybe my Dr could hvae had me come in early in explained these thing to me,rather that have his rude staff say such harsh things to me. It isnt easy to hear those words "you have ms there isnt anything we can do"...I have just been getting more and more depressed snice then. I feel like there is little hope now. I have fired him,no more going back to him. I just didnt care for how this entire situation was handled,from the start. My Family Dr is helping me find someone new. I am currently taking Copaxone and have been from the start,when I was first dx in 2006. I would like to switch...but waiting. I am shaking like a jitter bug and my body is weak. My legs are sooo very tired,I am tired. I dont know how I am getting through my days. I just dont know. How do you all do it? I want to go to sleep and wake up when this goes away,and thats never...so what are my options here? Wonderful.

I hope you find another doctor soon who is better able to explain to you what you can expect...and not expect...with having MS.  There is so much that comes with MS that really isn't treatable, even with the Copaxone (or one of the other drugs).  None of them guarantee that you won't have any exacerbations, or that you won't deal with disability along the way.
 
No hope? Well, from my perspective, there is a lot of hope. At least now there are meds that may slow the course of the disease.  When I was diagnosed, there was nothing.
 
Do talk to your doctor about the depression, too. An MS lesion in the wrong place can cause this, as well as problems with sleep and fatigue.  There are meds that can help with that, until you get through this exacerbation.  Take care.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 5/18/2008 6:16 AM (GMT -6)   
Thank you Uppity,I have recieved more hope here then I have anywhere. My sleep has been so out of whack. My therapist has been trying to help me with that and up'd my trazodone to 200mg...but still I sleep about 3-4 hrs a night...bummer. I just want to scream on the top of my lungs how bad I hate this DD,I'm sure you all understand that! I guess I am just really angry at this point...it must have just really HIT me that I have MS,where as before I knew I had it,but now it is showing me what it is able to do to me...I am angry. I dont want to be an angry bitter person. I just want to be me.
 
~Nichole~
 
Dx with Ulcerative Colitis September 2002
Dx with Multiple Sclerosis August 2006
 
 
 


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 5/20/2008 5:38 PM (GMT -6)   
First, Colee, I'm very sorry to read of your misfortune with your neuro's office and the lousy experience with the staff. I've got a GP's ofc like that and they're learning it's not wise to mess with me for long. I just sternly make my "next available appt" then see the doc, explain what's happened and she takes care of them again (it really ticks her off when they do that to me)... or they disappear as has happened already a couple times. But you gotta get in front of the doc to do that. Don't let the staff run you off, the doc will never know why you don't come back... on the other hand if you truly feel you're just not getting anywhere, find a new one and be sure they know you need asap attention when this hits...
 
But, be prepared for enduring the flares, the symptoms, the situations we go thru. I'm only realizing just how long and how much I've been dealing with it and am amazed at the depth of it's impact on my body over the past 12-13 yrs (since I noticed my first numb spot). It's so complex and intricate and extremely unique to each of us that it's almost awesome as much as it's awful!
 
With that said, please do look into the cane... I have the mobility issues of instability and have learned to be very prepared but my cane days are coming more quickly than I care to admit. (Yep, I've been listening) 
 
But around here there's always hope... and Uppity, just reading your comments, gives me tremendous hope when I think of what you faced when you first heard your dx... and what you have today to face it with... it's amazing! I've learned more than I ever thought I could in just these past 3months... and expect I'll just keep on learning so I can keep on hoping! yeah
 
Thankyou to everyone on this board!
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/9/2008 5:11 PM (GMT -6)   
Hey Colee: How are you feeling? I am new here and was reading your post and was wondering how things are now?

20yearsandcounting
Regular Member


Date Joined Jun 2008
Total Posts : 100
   Posted 7/9/2008 8:26 PM (GMT -6)   
Hello Colie,  I know it is difficult to bite what this disease can do but, you have to keep going with it.  It is what i would call my "twin"<<<<<the MS that is.  We can't make it go away.  I have had it for over 20 years.   Over the past 10 years I have had falls and it is not fun.. I know sweetie.  I'm 52 female.  I had to give up work 5 years ago.  A couple years ago I fell down the steps and was layed up for 2-3 months with a pinched nerve in my thigh.  So you must be very careful on steps.  (walking on flat ground or floors anywhere as far as that goes).  It caused pain down my one leg.  I had to apply ice packs to it all the time.  I am getting a cane.  You just keep the faith.  I didn't actually admit or mentally accept that I had MS for years.  I do now.  I hope you can find help with your children so you can get some rest.  Rest is one of the best things you can do for yourself.   
 
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