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Daughter Undiagnosed suspect Lupus or UTCD

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Posted 6/13/2007 7:41 PM (GMT 0)
Happy to find you guys.  For the last 3 years I have being struggling trying to get the Drs. to figure out what is going on with my daughter, who is 16 now.  She has been diagnosed with

Raynauds; Generalized hyper extensibility; Sensory Peripheral Neuropathy; Reading Compression Disorder; Processing speed deficit; 

Perceptual reasoning deficit and Carpal Tunnel.  Each month see is hit in a different area and we are getting no direction from the doctor.  Yesterday in the doctor's office I began to cry out of frustration and anger that I was being viewed and an over protective mother instead of someone trying to be proactive in addressing the health issues, which could affect any organy in her body, of her daughter.  Anyone else have symptoms that change from month to month.  Her ANA are normal.

 
Posted 6/13/2007 8:37 PM (GMT 0)
Welcome Sister Rose,

Wow it sounds like your daughter (and you) are going through a lot. Any mother would want answers and keep pushing until you get them. I have had a lot of frustration with medical problems in my life with misdiagnosis and rediagnosis but I can imagine that I would be 100x worse if it was my child instead of me.

Lupus is a very difficult disease to diagnose. I think hippi stated that it takes an average of 4 years and 3 different doctors to get there. I am technically still in that phase even with a UCTD diagnosis but my symptoms have been progressing and new things are popping up for me all the time. My doc is treating me for Lupus so I feel good about that. I'm so sorry that you are going through this.

Take Care
Posted 6/13/2007 10:02 PM (GMT 0)
Sister Rose,

I'm glad that you found us. My 19 year old daughter also has renaud's and a positive ana, but thankfully no other symptoms or problems. I live with the hope that her Reynauds will never progress and that she'll never be diagnosed with lupus. Some people with reynaud's never develop any other AI problems. She was diagnosed in the first grade with numerable learning disabilities but I spent years working with her and her teachers and over the years she finally became completely mainstreamed and now that she's in college none of her teachers have any idea that she was once on an IEP. It's been hard watching her struggle but I'm proud of her and can give you hope that sometimes these difficulties can be overcome.

But it sounds like your daughter has been living with many other problems as well and I hope you eventually get to the bottom of them.

My symptoms change in intensity from month to month and every day is a new day, but I can't say that I have different symptoms every month. Good luck in finding a doctor who will listen to you. I'd be sure to go in to every appointment armed with lab work and a comprehensive list of every symptom she has and has had. That will help the doctor try to put a name to what's wrong with your daughter.

Good luck
Posted 6/13/2007 11:59 PM (GMT 0)
Hi Sister Rose and welcome. I have to say that I really feel for you and have had a similar experience with my 9 yr old son. Two and a half years ago he got sick and over time developed joint pain and fatigue. He had hypermobility in some joints but very limited mobility in other joints. No one could ever quite figure out what was going on with him. He always had elevated inflammation markers (sed rate) but his ANA fluctuated between low positive and negative). He also kept getting repeated strep infections. Lupus, UCTD, JRA, and rheumatic fever were all diagnoses that were thrown around. Finally, just this month, we saw a great infectious disease doc who takes on complicated cases and he is certain that my son has a reactive arthritis as a result of his frequent strep infections over the past few years. After reading about this kind of arthritis, it really fits with my son's symptoms so we are not treating the strep with long term antibiotics. My advice is to either see a pediatric rheumatologist (if you haven't already) or go to a Mayo Clinic if there is one anywhere near you so that a team of doctors can go over your daughter from head to toe and they can all put their brains together on what might be going on with her. A good teaching hospital might be able to do the same thing. I know how hard and frustrating it is, but don't give up looking for answers - you and your daugher deserve them. Like the others said, these illnesses are so hard to diagnose and can unfortunately take years to accurately diagnose. Please feel free to ask any other questions you have. Take care and I'm glad you joined us.
Posted 6/15/2007 1:09 AM (GMT 0)
Hi Sister Rose,

   Another welcome for you. I'm sorry to hear that you and your daughter are going through so much. I know this is very frustrating for you both.

  I hope your daughter gets some answers soon and on a good treatment plan to help her feel better. We never know what Lupus and these other AI diseases will throw at us from day to day.

  Please keep us updated and take care. You both will be in my thoughts and prayers.

                                                                 Babs

Posted 6/15/2007 10:24 AM (GMT 0)
Hi Rose, like the others said Welcome to the group. I'm sorry for all you are going through. I hope you come here often with your questions and your frustrations. I beleive most of us have been "accused" of being a hypocondriac at some point or another. I know I certainly have been. Before they started talking about lupus I was driving my brother nuts. I can't say that I blame him when one day I hurt so bad I can't move and the next I feel fine just to turn around and have terrible pain and swelling in my legs and feet. Even my son who is a paramedic said I was a hypo! That really hurts. I know he was saying it out of pure frustration. But it doesn't make it any easier and it certainly doesn't help come up with answers. So Yes, Yes, Yes! symptoms can change from one day to the next and even one hour to the next. Keep searching for answers. Find a new doctor. Just look at it like it's will be worth it in the end to get your doctor the help she needs.
God Bless
carol
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