My name is Jenn Gallegos. I am trying to find out if it would be worth my time and money to travel in order to see a specialist for Antiphospholiipid Syndrome. I would like to provide some background information about me and how these antibodies have completely brought my life to a sudden halt.
I am a 31 yr old mother of four children who prior to my last episode was working full-time, going to school full-time, raising 3 children, pregnant with my 4th child, and was involved with every activity my children were involved in. I started experiencing problems when I became pregnant with my first child in 1998. When I found out I was pregnant I was also diagnosed with strep-throat, tonsilitis, a kidney infection, and sinus infection. My primary care doctor and spoke about this after I was told I may have APS because it showed my immune system was compromised. Shortly after finding out I was pregnant I began cramping and spotting which slowly subsided until I was around five months along at which time I began experiencing pre-term labor. I was put on bed rest for the remainder of my pregnancy and thankfully delivered my son at term. During the pregnancy I began developing cysts on various parts of my body with no explanation of why. After the pregnancy I suffered from anxiety attacks, depression, severe fatigue, then extreme energy which doctors told me was post pardum depression. These symptoms last just about two years then all of a sudden disappeared.
I then became pregnant with my second child in September of 2001. Shortly after becoming pregnant I began having headaches which were affecting my eye sight, balance, and causing me to blackout. My primary care doctor sent me to a neurologist who examined me and informed it was the hormones from the pregnancy that were causing these symptoms. Because of not having good balance and vision being so disturbed I was forced to begin my maternity leave at three months pregnant. Shortly after this I began showing signs of pre-term labor. I had kidney infections with blood in the urine as well. My son was born at just about 36 weeks in
May of 2002. Depression, anxiety, and fatigue became a real problem for me. I was sensitive to touch and no one could tell me why. These symptoms like with the first pregnancy disappeared after about a year or so post pardum.
Again, I became pregnant in May 2004 and from the start of the pregnancy I had problems. I had kidney problems, spotting, cramping, and then it was decided in July of 2004 thatthe pregnancy was over as the baby had died. A DNC was performed to a day after. I had unexplained weight loss after the miscarriage and it was thought for a period of time that I was having problems with my thyroid.
In January of 2006 I wound up with an upper respitory infection and a kindey infection. The doctors at the ER informed me I was pregnant again and they were worried about my kidneys. I was told my kindey function didn't look good and I was admitted over night while more test performed. During the first months of pregnancy I was seen in the ER many times for severe cramping, infections throughout my body. Then in May of 2006 I was rushed to the ER with severe pain in my back radiating to the front. While an ultrasound was being performed the doctor who was examing me informed myself and my husband that my left kidney had "stroked". After this ER visit I was then seen by Urologist and Perinatal doctor for the remainder of the pregnancy. In July of 2006 I wound up with another upper respirtory infection with a high fever and yet another kidney infection and then preterm labor started. At 28 weeks I went into full blown labor with my daughter and was admitted to the hospital. It took about 4 days to stop my labor. I was sent home on bedrest until full term. My daughter was born at 36 weeks. The same symptoms that I had with my other pregnancy continued.
In July of 2007 I again became pregnant with my 5th child. Same as with all the other pregnancies I was spotting and cramping, had another kidney infection and then at 10 weeks I began bleeding and cramping and was rushed to the ER where I was told the baby had been gone for about two weeks and the pregnancy had to be terminated. Another DNC was done and I was put on Yaz birth control until I was able to have my tubes tied to permenately prevent me from getting pregnant again.
Even though on birth control I wound up pregnant with my 6th pregnancy in May 2008. I figured out that I was pregnant because I couldn't stay awake. I would sleep for 14 to 16 hours each day. I then wound up with yet another respitory infection and kidney infection. I went to the doctor and he stated I would need to take it easy to ensure that me and the baby would make it through. I dealt with the fatigue and then in October of 2008 I was admitted to the hospital for preterm contractions and dehydration. I was sent home 5 days later taking trabualine to stop contractions. I was then seen by a perinatalogist who monitored me weekly for the pregnancy stress test and ultrasound. In December of 2008 I was admitted to the hospital when I went for my monitoring because I was having contractions 10 mins apart and I was dialated to 3cm. After a week on magnisium I was sent home on bed rest again. I remained on bedrest until the delivery of my son on January 10, 2009 at 37 weeks. It was noted in the medical record the doctor had trouble stopping my bleeding. About 3 months after my son was born I was sick again. I had a sinus infection, kidney infection, bloody nose, bleeding gums, blood in the stool and I still had not stopped bleeding from the birth of my son.
On April 16, 2009 I was rushed to the emergency room after passing out and I was bleeding from anywhere and everywhere a person could bleed from. In the ER my platelets were at 60,000 and dropping rapidly. I was transferred to another hospital and upon arrive I my platelets were run again and came back at 45,000. I was in the hospital for 3 days and the ob/gyn was notified of what was going on. He advised to injection with the birth control Depo in order to stop my bleeding. I was placed on steriods and followed up with a Hemotologist a few days. We continued to check my platelets and I was told I was suffering from ITP.
About a month after being seen in the hospital my family needed to relocate our family back to New MExico where we originally lived. It took about 3 months before medical coverage kicked in and I was seen in the hospital numerous times. I finally was able to begin seeing my primary care doctor whom I have known since I was 8 years old. My PC got me an appointment with a Hematologist. The hematologist ran many tests with no avail. He than referred me to a Rheumotologist who ran tests and stated I had Anticariolipin Antibodies but she was unable to make a diagnosis. I was then referred to a pain specialist for possible Fibromyalgia. The Pain Specialist I went to see finally referred me to a Rheumotologist.
In May of 2010 I finally saw the Rheumatologist who ran tests for Antiphospholipid Syndrome. After a the tests came back positive as per the APS protocol I was placed on a baby Aspirin and Plaquenil. I continued to see Rheumy and things were starting to get back in March of 2011. I still had pain, still suffered from fatigue but I was able to deal with it. Then in the middle of march of started to get headaches that were causing me to have blurry vision. The headache got worse through March and through April. In the middle of April I called the doctor and asked about my symptoms. The doctor advised me to go to the Emergency Room. I was a few days before going. When I finally deciced to go I was having stroke like symptoms. I was having trouble thinking of words, stuttering, left side weakness, barely any vision, vomitting, and dizziness. I went through many tests and was sent home later that night. The next morning I was back at the hospital. After the doctors saw me for the third time a Lumbar Puncture was performed. Over the course of 3 weeks I had just over 115cc of spinal fluid removed off my brain. The doctors told I was suffering from Pseudotumor Celebri. The prescribed Diamox and told me to lose 60 lbs and the sypmtoms would go away.
In the middle of May 2011 I started on low dose Methotrexate and a high blast of Medrol. I took this medications for about a month and a half. July 6th I went to see my Rheumotologist who did labs. That evening she called to notify me that my Potasium was low and she placed me Potasium to bring it back up.
I now have an appointment with a Neurologist, Hematologist, and Rheumatologist for second and third opinions. My labs came back negative for any autoimmune disorder or disease after the completion of Methotrexate and Medrol rounds.
I do still have pain, fatigue, and the headache. Although, it is not as bad as previous episodes. My family started a fund raiser so I could go see a specialist in NYC to see if there is anyone I can prevent these antibodies from coming back and reaking havoc on my life and body.
Throughout the last 13 to 15 years I have had to give up employment which I was striving to advance in, activities I was involoved in, and doing things with my family and friends that I would normally have no problem with. I would like answers now. I want to know what I can do. I have changed my diet as I was told to do. I started exercising for 40 minutes everyday.
What really scares me is my mother tested positive for antibodies. She has been suffering the same symptoms, and between ages of 48 and 52 she suffered four heart attacks, 9 TIAs, depression, High blood pressure and most recently tested for boarderline diabeties. I hate to see her suffer and I hate to suffer with no answers. I feel like we are sitting ducks waiting for something catastrophic to happen before anyone does something to help us.
I am also afraid for my 4 children and 3 brothers. What if this runs in the family. What is something happens that could have been prevented. There is no one that can take the responsibility because doctors really don't know a how lot or they refuse to listen. I hope my blog can provide someone with information or help to research for those that have yet to have a stroke, heart attack of a clot. I would like to see prevention, attention, understanding and helpfulness from Doctors in the near future.
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