Where do I go from here?

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BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 10/19/2006 9:31 AM (GMT -6)   
I was hoping to get some personal advice from others.

I am undx. Had a major episode in Jan. 06 and it resolved in June. I am in what I consider total remission. I am functioning at 100% with the occasional off day. My feet hurt sometimes when I first get up but it resolves within an hour. Saturday, I had an episode where my legs "froze". My son had to get me a stool to sit on until my legs started to move again. I get occasional numbness but nothing that I would consider significant.

I have been to 3 neuro's only one of them said not ms and she was not a good doc. The other 2 said probable ms but didn't put it in my chart. I have had an MRI with and without contrast of the head, neck and spine which came back normal. I also had an EMG which was normal. Tons of blood work and an appointment with a rheumatologist. I don't have any sort of arthritis.

My question is... Do I still press on at this point? Do they find anything when a person is in remission? Will they just think I am crazy because "I look so good"?

I don't mind waiting at this point since I am having very minimal symptoms. I don't need a dx because I am self employed and work from home. I have good docs set up IF things do get worse again.

Thanks for your opinions!!

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


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 10/19/2006 10:35 AM (GMT -6)   
I think you watch, wait, keep track of any new symptoms, and if they occur, then go back to one of the docs who said "probable MS" and say something like: "Remember me? I was here in (name year, or month/year) and you said this....and now I have new symptoms, which are..." and go from there.

If you've had the MRI's, tests, etc., all coming back "normal", repeating them right now will only give you a light wallet (paying for them). Unless/until something more comes up, they're likely to just come back normal again.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 10/19/2006 12:41 PM (GMT -6)   

BGD2ME:  I was misdiagnosed for years until a full blown exacerbation.  I am 52 yrs old, trained in med field and never saw it coming.  Knew something wasn't right, just didn't know what.  Have other med problems, but to look at me, no one can believe I have even a simple problem.  My advise is to get a pocket calendar (like the ck bk type) and list any unusual symptoms & if there was any stress, etc that might have brought this on.  I teach asthma mgt & have pts do this.  It is much easier for me to tell what is going on with them when I review the calendar (or did review ... no longer can wk).  This will help your neuro a great deal.  It will also help you because various things set off episodes.  Heat especially affects my cognitive thinking, gait, & balance.  By using the calendar, you may start to see a pattern of what might have set u off.  I learned quickly hot showers (used to be favorite) is a BIG no no.  Reading a lot instead of watching tv @ night helps me w/cogn thinking.  I had to learn to "go w/flow" & not let MS get best of me... the angrier I became when I couldn't do something, the worse symptoms became.  That's when I take "realty" break ... cup of tea w/good bk, listen to music (the CD this site has been a great help), etc.  I still have a hard time dealing w/"Peggy" (my left unfunctionally correct leg tongue ).  My neighbors probably still wonder who is "Peggy" & why am I constantly fussing at her ... they probably think it's my "imaginary friend" tongue yeah !  There are several other med problems that mimic MS and the MD is the only one that can advise u what is wrong, what it is, & what path to take.  The more he/she knows about your symptoms & daily life changes, the faster he can make a conclusion.  Good luck & remember patience is a must, especially for us! yeah tongue   (A good sense of humor helps ease the tension.)

Not MD, just another MS traveler.

 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/19/2006 7:08 PM (GMT -6)   
I don't know. Maybe we can figure it out together.

BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 10/20/2006 10:07 AM (GMT -6)   
Thank you for the replies! Kinda what I was thinking also. I have the time and I feel great so I'll just play "wait and see".

I did get a call from the nuero's office today. I guess I had requested my records some time ago, I forgot. Anyway, I am going to go pick them up, look them over and see if I can get any info.

Uppity, thanks for your advice! I respect your opinion and feel lucky to have you on this board!!

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


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/20/2006 4:38 PM (GMT -6)   
Hey Lysha

Great!! I hope the records are revealing to u and u'll get lots of helpful info. On what to do now...well u follow Uppity's advice. I have a mini van...wanna take this trip with me? ;)

rhonda

BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 10/20/2006 4:44 PM (GMT -6)   
Rhonda,

I'm half past crazy!!! Where do you want to meet me at?

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


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/20/2006 4:46 PM (GMT -6)   
HAHAHAHAHAHAHA...well maybe we should take a pit stop and let u rest!
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