Muscle Spasms

[mizgahobin]

Does anyone diagonased with lupus suffer from crazy muscle spasms and twitching.

[Taylormade52]

Hi,
I am what they call C4 deficient Lupus. From what I understand, that means that testing for Lupus is spotty. I can be positive one day and not positive another. Although the symptoms are always there!

[Teri001]

Hi Patti,

Here is the name of an RA at Presbyterian Hospital from my friend in Dallas.
These are her words about her doctor.

yes, I love my Rheumatologist. Her name is Dr. Kathryn Dao. Her PA is great too, Leilani Law. Her clinic is the Arthritis Care and Research Center, ph 214-373-4321. They are associated with Texas Health Hospital (Presbyterian). Very very well respected. She was referred to me by my neurologist (Gerhardt). She was very very thorough with me and Leilani was great.

Hope this helps you.  Please keep me posted.

Teri

[patti315]

Wow this is all so illuminating! I've had a tentative diagnosis of Lupus since last September but the rheumatologist seems hesitant to make the commitment, not that an official diagnosis would change anything really. I deal more with my PCP who is sympathetic but admittedly knows little about treatment for any form of Lupus, and my nephrologist who seems a little more knowledgeable but again, reluctant to cross the line. Does anyone have a recommendation for a rheumatologist in the Dallas/Ft. Worth area that is good with the disease?

PJ

[Teri001]

Hi,

I am so sorry that your eyes are giving you such trouble.  I went yesterday to our teaching hospital in Louisiana and had more labs run.  The doctor seemed very knowledgeable and strangely enough said that my Lupus diagnosis could be wrong.  That opened another can of worms but she did tell me I could keep lowering my Prednisone dose and get off the Imuran.  These were great words indeed as the medications have made me feel worse than before I started treatment.
I do wish you great luck with finding some answers and some relief.  These immune diseases are really rough on all parts of the body and there is no one place to try to fix, really challenging.  
Please keep me posted on your progress and yes you are right down comforters are nice although here it is still 82 at 245a and another 100 degree day tomorrow.  Life in the south and summer, ugh!

[aborre]

Thank you for your concerns! I am sorry you are going through the whole "health battle". I am at a dead end right now and about to start planquinel or something like that. I have had severe reactions to medications and cannot take anything for pain becase it KILLS my eyes when they get tired. I am going to go to a teaching hospital if this med does not work. The eye pain is by far the worst thing I have ever exp in my life! Hopefully I can get some answers soon. Until then its just me, the computer and my bed lol. Thank goodness for down comforters!!! ;)

[Teri001]

Hi, I am so sorry that you are going through such pain and uncertainty but I do understand and sympathize with your questions.  I too was hit like a ton of bricks last December 2011 when on a routine BP check and my internist ran the usual CBC and I received a call that my blood platelets were 53,000 when the low range is usually in the 140,000.  The next words out of his mouth were I am referring you over to an oncologist at our cancer center.  What I did not know was that all of my blood counts were out of whack and the search started for what was wrong with me.  Cancers were ruled out thankfully but I too then began this journey and have been stuck and poked and prodded so many times that I am used to it and I used to faint at the sight of blood.  Now, I just sigh and go on.  
I had a lot of muscle and joint pain and my left shoulder even froze in place before I was diagnosed by April 2012 with Lupus. I have had some restless leg but was put on Gabapentin which is used for Fibromyalgia pain and restless legs and it seems to work well. I have also had bouts with anemia throughout my life and it seems as the Lupus was around before I was aware it was around.  
My eyes have changed but I believe it has been due to the Prednisone doses.  I hope that you find a great RA and can get some relief for your symptoms.  
My biggest discovery yet is that no person wears the same Lupus hat and that each individual has their own set of issues to deal with.  Good luck to you and God Bless.