Can you have SPMS w/o ever having RRMS?
4
Yes - 57.1%
1
No - 14.3%
0
Maybe (please explain) - 0.0%
2
I don't know - 28.6%

 
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Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 11/8/2006 1:14 PM (GMT -7)   
Ok kinda nervous, just need a place to put this nervous energy =O. I have a Dr appt with my neuro tommarrow. She is great, love her and would recommend her. BUT being the silly RN that I am... I am a terrible patient. I don't tell her about what is going on with me, well not fully anyways. Maybe cuz I forget, maybe cuz I don't think it is important to mention at the time, maybe cuz I don't want to sound like a whiner, I dunno.
 
I have been posting here that my mobility is getting worse, well, cuz it is. Sunday night, after an active day of grocery shopping and cleaning and having a BBQ at my house, I started limping. I don't think it was pain related at that point. Later, when I went to bed, I COULD NOT roll onto my side because my legs did NOT want to move. This was very scary and lasted maybe? a half hour. I started to move my toes, then after a lot of effort I moved my knees then my legs. It felt like I had 100 pound weights on my legs. I was literally sweating and breathing heavy from the effort it took to move them. (probably coupled with anxiety).
The next day the pain was unbearable, walking ten feet put me to tears. It felt like I was walking on fire. Now the pain is bearable and back to baseline, but my legs feel weaker overall. My fatigue level is at an all time high, I can't even help those that come over to help me with things like doing the dishes. I am terribly depressed too. Oh yeah, and cognitively I think I suck because I can't even remeber if I had pain on Sunday night before I went to bed, yet alone the names of people that I have been working with for over three years...
 
Now I have to ask myself, how do I function at work if I function like this at home. Physically, although I work 12.5 hour shifts, I can do it mostly from a seated position (I work nights on a med/surg floor). The patient rooms are close and I feel like I can provide for my patients needs, in fact, I will sit with a more "needy " patient and talk for 20 minutes or more if needed and create a "plan" for the night. Everything I do is written down (by me) so I don't have to remeber anything really. Almost everything I do on a med/surg floor is redundant and I think the physicality of doing certain things repeatedly helps me to remeber much easier, then say, trying to remeber a co-workers name. I also have no problem asking for help when it comes to something I may not understand, even though at times it may make me seem like a dumb*ss. Having MS is something is not a secret at work with my coworkers, and given the opportunity, I LOVE to educate others on what exactly MS is.
 
If I look at myself as a patient that I am caring for I can educate myself and tell myself what needs to be done. When I look at myself as me, myself and I, I seem to loose all medical knowledge I may have and denial sets in really thick. When I was first diagnosed, I never went through denial, but I suppose now is the time. I am 25 years old, people always like to tell me "look at so-in-so, they weren't diagnosed till they were much older then you, so that means you have X years before you get 'bad'." I can't help but think that I am getting bad steadily. I know I don't have ppms, but I dont' think I have rrms either because I never really get better, and I never really seem to have a "relapse" either, per say.
 
Bless your heart if you read through this long winded post! lol. If you have anything thoughts, comments or feedback I would love to hear it. Also I was wondering:
 
CAN YOU HAVE SPMS WITHOUT EVER HAVING RRMS?
 
 
Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Copaxone SQ QD, Aricept 10 mg PO QD, Welbutrin XL 300mg PO QD, and Provigil 200mg PO BID.


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 11/8/2006 1:55 PM (GMT -7)   
Wednesday p.m.
 
Good afternoon, Sandy:
 
Your thoughts are quite common amongst us MS patients.
 
I have been DX'ed for 19 years, am no on disability, and I REALLY miss working.
 
But...it sounds like you may have a good working situation.
 
If I may reply...don't try to think about "what I used to be able to do..."
 
Times have changed for you....you might not be able to work as long as you used to...fatigue is the biggest problem for me...
 
Great luck....John
 
 
PS_ I have always said that is any of us are in the hospital, how long during the day, do you see your doctor...ten? fifteen minutes?  And who is with you the rest of the day?
 
THE NURSES!!!
 
 
PS--I have always said that if you are in the

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/8/2006 2:26 PM (GMT -7)   

I voted yes.  Here are some random thoughts I hope you consider:

1) You're a NURSE.  Would you advise your patients to not tell your doctor everything that is going on with them?  How can the doctor begin to help you learn to deal with your disease if you don't tell her what is happening?  Just as you do with your patients, you need to develop a list of most troublesome symptoms and if you're afraid to voice those to your doctor, then hand her the list.

2) You're a nurse. You probably have access to many more medical journals than I will ever encounter.  If you do a bit of reading in some of those, you'll learn that "remission", when it comes to MS, does not always mean a complete absence of symptoms as it might with some other diseases that also "go into remission".  "Remission" in MS very often means a lessening of symptoms, a reduction in intensity of symptoms.  Once the damage is done to the central nervous system, once the myelin is destroyed, the disability...the symptoms...remain.  They may lessen in intensity over time, and then intensify other times -- particularly when you spend all day on your feet, "grocery shopping and cleaning, and having a BBQ".  You noted that you sit a lot at work -- so don't notice or pay attention to the fact that your legs are weaker...but it becomes obvious when you're on your feet all day, at home.

3) People can be diagnosed with secondary-progressive MS at the start.  Sometimes it means that indeed you've had MS for some period of time before you sought medical help (and a diagnosis).  Sometimes it just is that your particular "case" is that you have spms.  But it sounds to me like you probably do have relapsing-remitting MS, but are just hoping that "remitting" means an absence of symptoms...and while some folks do talk about that, all the folks that I've known who have MS will report that they've never had a complete absense of symptoms,

but have always experienced some  symptoms. Fatigue is common -- you may have to consider working fewer hours.  And while you're seeming to cope now with keeping track of all you need to, to serve your patients, that might become a problem in the future, so you might want to think about how to deal with that. It's easier to think about work accommodations now,  before it's a crisis, than later, should you have a major exacerbation and be unable to work.

4) Denial is a wonderful thing. It can protect us for a long time, from a lot of hurt and anxiety. But eventually there has to be a time when denial continues down the river and reality sets in. You've got a chronic disease...and while 25 is certainly a very young age to have to deal with that, you have to deal with that.  MS does suck. Big time.  But there isn't much you can do about it.
 
5) which brings up: Guilt. You have nothing to feel guilty about.  You didn't bring on the MS, you didn't do anything to get MS, the fact is, you have MS, and you'll have to help those around you learn what that might mean: you can't shop all day, clean house, host a BBQ, and lean up afterwards, without paying the price, big time, the next day (or several days). That MS-fatigue is unlike any fatigue they might experience -- your body is telling you it's doing the best it can to cope with a terrible set of signals coming from your brain, muscles that aren't used to doing certain tasks being put into play to do them, exhausting you -- and they're going to have to deal with pitching in and helping, sometimes without asking, sometimes overriding your insistence that "..I can DO this!" when they see that you really can't. And so on.
 
Tough to do at 25.  Truth is, tough to do at any  age. I fought it long and hard when I was first being diagnosed at 33.  But there it is.
 
Ramblings of an old lady. 
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 11/8/2006 2:40 PM (GMT -7)   
Uppity and John, some great thoughts there!
 
Indeed some people with MS are diagnosed with SPMS at the start, but its usually after they've had RRMS for a while.  The RRMS phase can last as short of time as two years to decades , and there are those that never develop SPMS. 
 
I have a thought for you to consider about voicing how you are doing with your doctor.  In addition to writing down symptoms, which is a great way of communicating, maybe you could copy and paste a few of your posts here too to take with you.  You seem to be very descriptive with us here, and maybe it will help.
 
Good luck, let us know how your doctor visit goes  :-)  
 
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pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 11/8/2006 3:10 PM (GMT -7)   
Dear Sandy C: 3 neuro's said "yes" to MS for me; the one I go to is a professor at a med univeristy so I take his info more seriously. I have 5 lesions in brain, 0 on spine, edema running along the left bones between knee and into toes. I have all the MS symptoms (fatigue, imbalance, intolerance to heat, BIG problem w/cognitive thinking the longer I am on my feet and pushing myself, etc), but the diagnosis of periventricular leukomalacia is affirmative. I'm being scheduled for neuropsych test to see which areas of the brain are "dead" and which are being affected by the "MS symptoms." When I sit alot, the pain in my legs is bearable, if I walk for even a short distance for any length of time, the pain is so unbearable it has brought me to tears. According to my MD, this is caused by the edema (even neuro doesn't know why it's there ... confirmed by MRI). MD said this is "unusual" ... what in my body isn't! I wonder if you are having the same problem ... your symptoms sound just like mine. Problems w/cogn thinking is a BIG problem for me if I do anything but sit. I'm a resp therapist and used to running up & down stairs, working codes, etc. I turned in my resignation when I went to place a pt on a ventilator & it was as if I had never seen one before. It lasted only a few seconds, but enough to really shake me up! I told them at work I was resigning due to hurricane because I thought I could take a couple of weeks off and "fix" myself. My last day of work was May 30, 2006. Towards the end, my coworkers could see something was wrong, but didn't really say much until I left. Do you ever look at simple med wds & have trouble (for short time) knowing what they mean when you have always used them? My lt leg & ft has a daily tendency to go completely numb. It stinks when your body doesn't do its "usual thing." I started P.T. Monday & it has already made big difference in balance. Good luck!

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/8/2006 3:57 PM (GMT -7)   
Hey Sandy

Sorry, not feeling well today and just can't elaboate, but wanted to back up all the comments u've gotten with an 'i agree'. Some excellent advice Kimber gave u as well! I had to do that for my first neuro appt and it was priceless because, as kimber said, u just "talk" here and it's much more descriptive than a list of symptoms. Take good care and know i'm rooting for u and hoping u feel much better. MS...or whatever this is with me...STINKS on ICE!!!

rhonda

Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 11/8/2006 4:07 PM (GMT -7)   
So how do I view the previous posts, past the last five???

Thank You ALL for ur support and advice! Uppity, you have helped me to identify a real bump in the road -Guilt- I didnt' realize I had it so bad, but I do. How to move forward... I dunno yet...
Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Copaxone SQ QD, Aricept 10 mg PO QD, Welbutrin XL 300mg PO QD, and Provigil 200mg PO BID.


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/8/2006 4:48 PM (GMT -7)   
Hey Sandy

Sorry, no good answer for u there. I had to go back to my first post (per the date i remembered joining) and go page by page and look for anything descriptive about new symptoms. It's painful and time consuming, but was well worth it for me. To me, when u describe something in a place like this...and u'r just talking...u find u go into details that u wouldn't with u'r doc. U try to compact everything into nice, neat little sentences and forget some important details like how it FEELS to u. I hope it's not too much and u can find a way to get the info u need without all the troublesome searching it may take.

rhonda

BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 11/8/2006 5:00 PM (GMT -7)   
Sandy,

You can view your previous posts by doing a search. You search using you name, posted by, max # of posts 200, selrct forum, select date range. The search engine for healing well is at the top right of page with the "Home, Chat ect."

Hope this helps.

Lysha
When everything's coming your way, you're in the wrong lane.


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/8/2006 6:10 PM (GMT -7)   
Hey Lysha!!

Great info!! I had no idea u could do that! (bet it would help if i'd have looked) :(

Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 11/9/2006 11:08 AM (GMT -7)   
Thank You Lysha! I always thought it was possible to do a search like that but never knew how, lol. The search only lets me go back to the beginning of september even if I say I want to see a longer time period. Ah well, it is enough for me I think. I printed up everything I posted related to my course of the disease and I am ready for my doctors appt today!

I am also going to ask her about addison's disease. It seems very possible that MS can "cause" it in my opinion. The pituitary gland is located in the brain and has a neurosecretoy cell. Well anything with "neuro" in the name makes me think of mylin and MS directly affecting. I may be totally off base here but I think I will ask anyways. If I have addison's then that means there is real treatment for my fatigue and I can go back to "normal".... well unlikely ... but hopeful
Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Aricept 10mg PO QD, Welbutrin XL 300mg PO QD, and Provigil 200mg PO BID.


BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 11/9/2006 11:54 AM (GMT -7)   
Sandy,

Glad I could be of some help.

Good luck at your appointment and let us know how it goes.

Lysha
When everything's coming your way, you're in the wrong lane.


CourtenayFrances
New Member


Date Joined Nov 2006
Total Posts : 3
   Posted 11/14/2006 2:53 AM (GMT -7)   

Hi Sandy

This may sound kind of airy fairy to you but maybe not.  I wonder if you have ever tried a cleanse or considered this.  I had symptoms similar to you and they went full blown into left side paralysis.  I had all the tests and second opinions.  Then after the first bout of steroids I investigated and researched alternative therapies.  I did this for over a year and got better despite what the experts were telling me.  I appreciate Dr's, my boyfriend of 2 years in fact is in med school so I do think there is definitely a place for allopathic medicine, I just wonder if you have been exposed to alternatives.  I had all my mercury fillings taken out, changed my diet and started to meditate.  I watched this movie recently that was awesome called The Secret - you can order it from www.thesecret.tv and I also did a cleanse. www.endlessenergy.ca - this cleanse is different from those I usually hear about.  The others are taking away lean muscle as well as fat but this flooded my body with nutrients while I cleansed and I felt awesome and continue to feel so every day.  Hope this helps.

 

 

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