Discussions By Condition: Nerve conditions

Misdiagnosis?

Posted In: Nerve conditions 10 Replies
  • Posted By: Anonymous
  • July 22, 2008
  • 07:22 PM

IN Feb. of this year my wife was diagnosed with SHY-Drager Syndrome. She had orthostatic hypotension, a blue tint to the skin, inability to urinate at times, walking very slowly with her legs bent at the knees, loud sleeping plus a few more symptons. She was started on Midodrine which seemed to help with the fainting due to the hypotension. Until recently her blood pressure started to climb whether laying or standing. I took her to urgent care once her blood pressure reached 200/120 at which time she was prescribed norvasc which is a blood pressure lowering drug. that has not helped her blood pressure remains high. If she truly has SHY-Drager how could this be?

Reply Flag this Discussion

10 Replies:

  • Who else have you discussed this with? I can try and reason this out with you, but unless there is a silent neurologist on this board, you really need to be talking to her neurologist about this. Did she continue to take Midodrine while taking Norvasc? The two drugs have opposite mechanisms of action. The difficulty in managing the autonomic dysregulation in Shy-Drager is the brittle nature of blood pressure control. I know that you hope it is a misdiagnosis and I hope so too. Provide more information on the medication history and we can talk it out a bit, but definitely open a dialogue with her physician. Any physician would feel very comfortable with the idea of a patient and their family having questions about a diagnosis like Shy-Drager. You should not hesitate to bring your concerns, and especially your ER visits to her neurologist, because often times that information might not make it back to the neuro office. It is just good to close the gaps in the history. Doing the research that you are doing and being vigilant about a diagnosis especially in a rare and complicated case is absolutely vital to secure the best possible care for your wife and I really admire people like you. Seriously.
    fewd4thought 126 Replies Flag this Response
  • Hi again. I wanted to include a link to Vanderbilt's old but useful website on Multiple System Atrophy:Vanderbilt Autonomic Dysfunction Centerhttp://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4791 I also wanted to quickly verify that your wife (i think the patient was your wife) was not a diabetic/ had been ruled out for:Autonomic neuropathy (Very similar presentation to Multiple System Atrophy (Shy-Drager), less severe)
    fewd4thought 126 Replies Flag this Response
  • I have spoken to her neurologist who was the person who told me to stop the midodrine due to her dangerously high blood pressures. I also contacted the shy-drager support group who directed me to vanderbilt. after speaking with them they seemed a little stumped after she tested neg. for an infection of some kind. By the way her neuro. has told me he has never treated anyone with this disease but he "knows about it and is reading up on it". one more thing that I need to say is she also is a liver transplant recipient 10 years out.
    Anonymous 42789 Replies Flag this Response
  • Dude. Kinda big news about the liver transplant. You should probably get to a Movement Disorders center and get someone who really specializes in this stuff to take a look at your wife. I would suggest getting off of this site and getting some real medical care. Invoking a diagnosis like MSA in a transplant patient is a tall order. What other major medical conditions does she have that you haven't shared? Heart transplant? Diabetes? end stage renal?
    fewd4thought 126 Replies Flag this Response
  • Dude. Kinda big news about the liver transplant. You should probably get to a Movement Disorders center and get someone who really specializes in this stuff to take a look at your wife. I would suggest getting off of this site and getting some real medical care. Invoking a diagnosis like MSA in a transplant patient is a tall order. What other major medical conditions does she have that you haven't shared? Heart transplant? Diabetes? end stage renal? I agree wholeheartedly.DOM
    acuann 3080 Replies Flag this Response
  • Thank you for your input!!! Regarding any other conditions, other than a few infections due to her being Immuno-suppressed, all her labs have been relatively normal, (including her kidney function). The biggest problem is that we live in Las Vegas where there is no care at all for transplant patients. If anyone out there could recommend a tertiary center somewhat near Las Vegas it would be much appreciated. Again thank you for your insight!!!!
    Anonymous 42789 Replies Flag this Response
  • Edsam, Where is liver doctor that did transplant? There are some of the symptoms that can be tied to problems there including the hypotension. So there are several things to rule out. Best of Luck
    Abbydoodle 138 Replies Flag this Response
  • edsam- Without a doubt UCLA is your spot for Liver transplant follow up and Movement D/o. The medical center is world class in both regards. You will find someone who can help you. Worth the drive/fly.
    fewd4thought 126 Replies Flag this Response
  • One of the great doctors from there came to Texas. He is my doc now. I played stump the doctor with him at first. I won. Impressed him and assistant. He kept saying I had Wilsons disease. Said no I did not it was ruled out last year. He wanted to know by who. Said me. Blew him away. He did biopsy when others were done for the UCD. No Wilsons. They had to admit I was right. :D I have a lots of other stuff wrong but not that. He is a great doctor though. They are watching my liver. Hope no transplant.....
    Abbydoodle 138 Replies Flag this Response
  • To all responders,Thank you for all your help, I will be contacting UCLA today and hopefully I can get her a consultation asap.
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.