Please help my sister!

My sister is 37 years old, of normal weight (perhaps a bit on the thin side for her height) and had not been taking any medication until she began having these symptoms. Initially, she though she had been clenching her hands at night while sleeping, because she was having pain in both of her upper arms.  Within a couple of weeks, she called to tell me that she had gone to urgent care due to severe pain, and it was determined that she had a superficial blood clot in one arm.  Next, she had a pain in her calf that seemed to have moved up higher in her leg over the course of a few hours.  No clot was found in her leg, and she was sent home with an Rx for an anti-inflammatory medication.  Afterwards, the pain in her arm and soon her chest, became so severe that it would wake her at night.  She also developed some numbness in her right leg, urinary control problems, and the sensation that she had an object in her right eye.  Extreme fatigue caused her to sleep an enormous amount.  She had no stamina and constantly felt physically ill.  Years previous, she had been tested via spinal tap TWICE for MS due to symptoms such as feeling like a band was wrapped around one leg and having complete numbness of one eyeball, but the tests were negative.  When these more recent symptoms occurred, she underwent a multitude of ultrasounds, MRIs, blood tests and physical exams, all of which were inconclusive.  Her doctor tried traditional pain medicine, which had little effect on her pain, but did allow her some sleep. He also tried neuropathy medication (Lyrica) as well as giving her Ambien to help her sleep.  The only medication that seemed to help at all was prednisone in high doses (120mg/day for the first month).  Over the course of the past months, she had tapered herself off of the steroids very gradually.  It has been almost 2 months since she has been totally off of the prednisone, but she called me tonight to tell me that her arms had been hurting again and that she had developed enough pain in her right eye that she was seen by an ophthamologist, who found no obvious problems.  Today, she noticed that her right hand is ice-cold, and the pain is again severe in her upper arm. She was seen in immediate care and was again given an anti-inflammatory.  Later, she had numbness on the back side of that arm and went back to the urgent care to ask for an ultrasound, as she is terrified that she may have another clot.  Do any of your doctors have guesses as to what we should be asking/doing to get a diagnosis here?  I am a pharmacist, and I am very concerned with the effect the steroids have likely had on her bones, etc., but if this is what is necessary, she will do it.  However, it seems that someone out there should be able to diagnose her problem.  Please help us!

[PlateletGal]

You may want to consider C & P'ing your post and posting it again in MedHelp's undiagnosed forum. I think you will have a better chance at getting a response and there is a also a physician who frequently posts in the forum. Here's the link:


http://www.medhelp.org/forums/show/95

Best to you & your sister !!!

~PlateletGal