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Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 2/25/2011 9:37 PM (GMT -6)   
The other topic is getting rather long, so I started a new one.....
 
Thanks heather *hugg* I did want to tell you everything, but I hate to dominate chat like that. So many wait all week for chat night that I don't like take up everyone's time. I have been on amitriptyline for a long time (3yrs now?). It was increased by 100mg. I have been sleeping around 5hrs a night this last week. A few times about 4hrs.  From what I can remember I am only waking 3 or 4 times. For water and to use the restroom. That is a big improvement for me. I am waking in quite a bit of pain. I wake up around 430am. Take my meds and just sit for the first 30 to 40 mins, drinking coffee. Then when it finally looses its grip, I get up to make breakfast buffet.

   Day time is getting a little easier. I am having many afternoons at level 5. Long stretches of time too, I would say around 6 to 7hr stretches. The.. fog is a struggle. I am trying so hard to become accustomed to it. I know I am running out of options and I am doing my best to work with what I have got. It is hard to become accustomed to my pain / muscle medication being doubled. I am very concerned about my leg still collapsing, but it is easy enough to get assistance with walking.

    I think they are still holding out hope that a cause can be found. They are reluctant to label me Idiopathic. It is because, I think, that it is rare that a fully mature adult begins progressive deformities. Let alone for such rapid progression in 4 years time.  I do not see that they have anything left they can possibly test for. The last set of genetic panels done over summer/fall 2010 were costly and should have eased their minds. Still they are reluctant. So, the longer I can wait before seeking surgical solution, the better. Of course the time just isn't right with regards to my family either. New home, the bees being so little and needing help it just isn't the right time. Though if things get much worse we wont have any choice. I must admit that I still pray that one day they will be able to put all the pieces of the puzzle together. So many of the recent problems have no known cause. I always wanted to be unique, though this is not really what I had in mind...    smhair  

     I will let you know how all that testing goes. I got everything done that they asked of me. I still don't understand what the rush is about. Had they not needed the MRIs of each section of my spine, they never would have known about the "mass". I have no clue if they plan on doing anything with regards to the kidney function and creatine levels either. I suppose I will find out soon enough. I must admit it really isn't on the forefront of my mind. I have so much going on with my spine and various other problems that I just don't have time to really think about the other stuff.

    *warm hugg*
            dani



TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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momtofourangels
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Date Joined Apr 2010
Total Posts : 2261
   Posted 2/25/2011 11:33 PM (GMT -6)   
Dearest Dani. I'm not Flowery but I do wish you good luck and pray that the tests give the doctors what they need to finally diagnose you with whatever it is you have. I'm glad to hear that you're able to sleep a bit longer at night and are at a lower pain during the afternoon for a time. I sure wish you could get even better with your pain. You're such a sweet lady and you don't deserve none of what you're going thru. Love ya my sweet friend.

Big soft hugs
Loretta

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 2/27/2011 10:27 AM (GMT -6)   
Thanks Loretta,

    I wanted to tell you that the term "Idiopathic" is very common for people with multiple progressive curvatures. It just means, quite simply, "No known cause". It just means that there is no "cause" that is causing my progressive deformities. It is actually the most common form. I don't have genetic factors, or arthritis, or degenerative disc disease, et al.... It just means that they have tested me for "known" causes and have not found a "known" cause yet. This type normally begins in childhood, not adulthood. Also, "progressive" means just that. I am that 7% of folks that have rapid "progression". Normal progression is less than 1% per year for "normal" "progression" when "progression" is present. I hope I explained that well enough.

  I must confess I sitll pray for a cause or slowed progression. One or the other, or heck even both would be nice! I guess in the mean time I just have to make my curves look as fashionable as possible  smilewinkgrin  

      Yes, I too hope they can figure out what the other tests mean. I know it sounds terrible, but next to my spine, I always think "Well, cant be much worse than my spine!" Never the less I will let you guys know as soon as I hear back from them.

*warm hugg*
     dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
Mail

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 2/27/2011 4:11 PM (GMT -6)   
Ok Dani. Thanks for explaining it. I appreciate it. I still pray that it does stop progressing and goes the other way and gets healed.

love and hugs
Loretta

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 3/2/2011 1:11 PM (GMT -6)   
Hi Dani !
Sorry it took so long to get back...I read it a few days ago and then been so busy...
 
First let me say....Breakfast Buffet!?! those kids won the lottery when they got you for a mom:)
 
Time will only tell what your path will be. A good attitude is all we can have sometimes. Pray and wait.  Sounds like your balancing all the imputs from this and that Dr. very well. There are many people here who care about you and are going to stear you in the right directions in making good desicions.
Lots of warm Hugs and your in my prayers
flowery a.k.a. Heather
 
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