My sister has been going through a lot of pain the last 6 or so months. She has been diagnosed with Autonomic Neurological Disease, but it seems that she has a couple of other things going on with that. She has these symptoms
Critical Pain in Jaw Joints
Critical Pain in Ear (To the point where she cannot listen to anything above a whisper, or the sound of her own voice)
Swelling of Joints (ankles, wrists, neck, ear)
Swelling of the tongue and lips
Swelling of the body
Swelling of the Lymph nodes or/and adrenal glands
(She was diagnosed with adrenal failure, I think it's also called Cushing's disease, but cannot start treatment because of the 4mg of prednisone she is on.)
At first, the doctors said it was Lupus, but now we don't know.
She had an allergic reaction with the Lyrica. This is very rare, but it was because of the combination of Lyrica and Prednisone over such a long span of time. Taking her off the Lyrica has affected very few symptoms.
Any help at all is greatly appreciated. My mother, my sister (who has been in the hospital for over a month now), and I really need any and all suggestions.
Thank you so much!
First I would like to say I am so sorry this is happening. I just want to ask if the hospital she is in is in, it a good hospital?? You do have the choice to send your sister somewhere that may be more knowledgeable and they could possibly find out what is going on with her.
This happened with my sister. I know that if she had gone to a different hospital things would have been different.
Just a thought.........
Sending prayers and positive thoughts your way........
The Following User Says Thank You to Daisygrace For This Useful Post: StrongSister (06-29-2013)
Thank you very much. We have been to about every major hospital in Florida (Where we live) including Celebration Hospital (not much help there), Florida Hospital South, Shands Hospital, and the Mayo Clinic.
Has your sister been diagnosed yet?
Hi,it sounds like you are doing what ever you can. I'm the one with lupus. But have other health issues that I go to Cleveland Clinic to on Ohio. I do know there is one on Florida as well. Have you checked that hospital out? May be an option? God bless and keep us posted
StrongSister, I'm sorry your sis is struggling, also that she's had to make the rounds of so many hospitals.
I know one possible cause of Cushing's is steroids, esp. if abruptly discontinued instead of tapered. Was her dose always low, like 4 mg? That seems like a really low dose to cause a massive cortisol problem. Have any of her doctors commented on that?
I think another cause of Cushing's is pituitary tumor.
Not sure where in Florida you are... Cleveland Clinic is in Weston (looks due west of Fort Lauderdale). And there's a Mt. Sinai branch in Miami Beach (Mt. Sinai is a teaching hospital in Manhattan). I hope her doctors now have a firm grasp on what's going on with her, and that she's improving. Best wishes to you & your entire family, sincerely, Vee
Just now seeing your post, but a couple of thoughts and questions: Adrenal failure is Addison's Disease. Cushing's is the opposite-an excess of adrenal hormones. Prednisone is one of the treatments for Addison's (low adrenal hormones), but 4 mg is inadequate dose. It needs to be at least 7.5mg a day to match the normal production of body. Why did they think she might have lupus? Does she have kidney problems causing all the swelling or more like an allergic reaction with hives and itching? Have they tested her for autoimmune thyroiditis? (hashimoto's) If the extreme nausea and dizziness is caused by motion, she may have autoimmune inner ear disease. It causes vertigo (spinning) and nausea with movement of head or body. Can also cause ringing in ears. An ENT should see her for that evaluation. There are meds. like motion sickness meds, that can help, plus certain diuretics. These symptoms are more than dysautonomia, but that condition can occur in lupus. If that is what she has, 4 mg Prednisone is a tiny dose. She may need 10X that much (40mg) a day initially. I think you should have a good sit-down chat will all her Drs. and make sure A. they are talking to each other and B. they are keeping you updated on their thoughts and explaining things. A team conference can be requested with Drs. and nurses and family together.
Last edited by ladybud; 07-05-2013 at 04:02 AM.