Saw the doc today

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mom46
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Date Joined Dec 2004
Total Posts : 8198
   Posted 8/4/2006 11:51 PM (GMT -6)   
Hi Everyone,
  I saw my rheumy today and took her a list of all the symptoms I have had since I last saw her. She read them all and agreed that they are not lupus symptoms and that I'm not having anxiey/panic attacks.
   She thinks I have something called, "Dysautonomia", I'm still trying to find some good info on that. What I have found so far is that it is when the Autonomic Nervous System malfunctions. The ANS controls all the body functions and I guess when you have Dysautonomia, it is out of wack.
   She is sending me to another neuro and to a clinic that specialies in Dysautonomia at UAB.  The appts haven't been set up yet. They are suppose to call me when they are.
   She also put me on 3 new meds and upped my dose of klonopin to help with the tremors.
   So when I find out more from the neuro and the clinic I will let you know what they say. Tks for all your help and support, I really appreciate it. Take care and have a good nite.
                                                Babs
Diagnosis: Lupus and Restless leg syndrome 1990, RA, Asthma and  Fibro 1994, Sjogren's and Raynaud's 1995, Diverticulitis 1998, Minor stroke 2004, Atherosclerosis 2004, Seizures march 2005
 

JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.
 
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rhondab
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Date Joined Mar 2006
Total Posts : 2146
   Posted 8/5/2006 12:37 AM (GMT -6)   
Hey Babs

U know u have my prayers. I hope they can figure this all out for u soon and that the upped doses of med help u in the meantime. Do u mind my asking what state u'r in? U said UAB. Univ AL? I'm in MS and wonder if we're neighbors.

Take good care and know u'r in my thoughts and prayers. I'll be watching for u'r update.

rhonda

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 8/5/2006 12:45 AM (GMT -6)   

Hi Rhonda,

   We are neighbors!!  I live in Alabama, near Auburn, but UAB is in Birmingham. My daughter goes to college there.

   Thank you for your thoughts and prayers. I hope they figure this out soon too. It's just annoying, when you know something is not right and not know what it is.

   Take care and you are also in my thoughts and prayers.

                                                   Babs


Diagnosis: Lupus and Restless leg syndrome 1990, RA, Asthma and  Fibro 1994, Sjogren's and Raynaud's 1995, Diverticulitis 1998, Minor stroke 2004, Atherosclerosis 2004, Seizures march 2005
 

JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.
 
Please help Healingwell succeed in helping others. Any donations will be greatly appreciated.
 


rhondab
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Date Joined Mar 2006
Total Posts : 2146
   Posted 8/5/2006 1:01 AM (GMT -6)   
Hey Neighbor!

Well welcome to my neighborhood! U know my mil and sil are going to be at UAB on Monday of next week. It's a great hospital and u should receive very good care there. I live very close to the AL line, down south MS. It's interesting how u can be so close and meet on someplace like this. ;)

I will be praying for u on u'r appt and hoping all goes well. Limboland is no place to be. Seems we are neighbors in more ways than one. Not knowing isn't fun, but it sounds like u have a very good doc and are being taking good care of. Be sure to keep up with u'r symptoms or write them down for the new doc if u'r not already doing so. I can tell u it's almost impossible to remember them all when u'r in the doc's office...and pretty hard to remember them all to write down after the fact. I have this little digital recorder that i've decided to start using. Sounds hokey, but i think it will help. I saw the idea on a pretty hokey commercial, but it makes sense if u can't remember to write things down or if u put it off.

Best wishes to u and i will be praying for u'r quick dx and treatment. Take good care Babs.

rhonda

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/5/2006 5:43 AM (GMT -6)   
For those of us who don't know what this is, here's a website that described it: 
 
I hope you get in soon to see the specialists, and they can advise you on a proper course of medicine and treatment.  You should be sure to tell them about your earlier diagnoses, and see if perhaps instead of those things, you've been experiencing symptoms of this all along.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


got better things to do
Regular Member


Date Joined Jan 2006
Total Posts : 176
   Posted 8/5/2006 7:22 AM (GMT -6)   
Babs,
I was also dx with autonamic neuropathy before my dx of ms, autonamic neuropathy and disautonamia are the same thing I believe. Hang in there!!



LIFE
Just when I was getting use to yesterday......Along came today.
 
 
             ~~LIFE~~       


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 8/5/2006 1:21 PM (GMT -6)   
Hi Babs,

Its great that the docs are listening and wanting to investigate further for you! Please let us know when you find out anything and I hope the increase and additional meds help you in the meantime.

Kimber
 
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mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 8/5/2006 2:23 PM (GMT -6)   

Tks Rhonda, Uppity, Life and Kimber,

  Rhonda, I hope things go well for you MIL and SIL at UAB and they have a safe trip. The idea of a digital recorder sounds good. Tks for your thoughts and prayers. Let me know how your in-laws do at UAB. Take care and God Bless You!!

  Uppity, Tks for putting that link up. I guess I should have done that for everyone, but wasn't thinking at the time. My labs and other symptoms have already comfirmed the dx's of lupus, RA, Sjogren's, Fibro and Raynaud's. These recent symptoms and the ones I was having last year are the ones that are different. I just hope she knows what she is doing, because she has given me the meds that treat dysautonomia. I hope I get to see the neuro before I go to the clinic to get his prespective on this. Tks for your help. You are a very wise and helpful lady. Take care and God Bless You!!

  Life,  Thats interesting that you were dx'd with autonomic neuropathy before your dx of MS. Tks for letting me know. I will be hanging....I have for awhile...lol. Tks again and take care.

  Kimber, Tks for your support. You are always so sweet and helpful. I'm going to start the new meds tomorrow, so I will see if they help soon and if so, that will be good. My sleeping pattern has been messed up lately and I have to take these meds at the same time each day, so I will have to make myself get up and take them in the mornings and the same time at night. I will let you know how the appts go. Tks again and God Bless You!!

  You are all great and very supportive. I do appreciate each and everyone of you. Tks again and take care. Hope you all have some great days ahead!!

                                                 Babs


Diagnosis: Lupus and Restless leg syndrome 1990, RA, Asthma and  Fibro 1994, Sjogren's and Raynaud's 1995, Diverticulitis 1998, Minor stroke 2004, Atherosclerosis 2004, Seizures march 2005
 

JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.
 
Please help Healingwell succeed in helping others. Any donations will be greatly appreciated.
 


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 9/9/2006 9:52 PM (GMT -6)   

Hi Everyone,

    I'm not sure about the dysautonomia dx. I have been on the new meds since right after I last posted over a month ago and they are not helping at all. My symptoms are actually getting worse.

   I have an appt on monday to get a VEP test done and I see the neuro on the 27th. I have called my rheumy about 3 times in the last month and I dont think she knows what to do to help. Thats why she scheduled the appt to see the neuro.

   I have been having blurred vision, muscle weakness, my balance is worse, I have been falling, I get vibrations sensations in either one leg, one arm or my head.., my feet and legs burn at night when I lay down, I have been having urinary urgency, loosing bladder control or sometimes hesitate..., my bowel movements have changed, Swallowing problems the last few days, slow word recall, memory loss is worse and more forgetful, parts of my body get cold at times, I still have the tremors, but have just found out this morning that they stop when I lay down for some reason, more headaches, pain in the back of my neck and lower back.

   I know that was alot, but I just wanted to let you all know what has been going on since I last posted. I hope to finally get some type of dx underway when I have the VEP and see the neuro. I will let you know what I find out.

   Tks for all the help you have been giving me. You all are great and caring!!  Take care and you are all in my thoughts and prayers.

                                                         Babs


Diagnosis: Lupus and Restless leg syndrome 1990, RA, Asthma and  Fibro 1994, Sjogren's and Raynaud's 1995, Diverticulitis 1998, Minor stroke 2004, Atherosclerosis 2004, Seizures march 2005
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.
 
Please help Healingwell succeed in helping others. Any donations will be greatly appreciated.
 

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