Remember how I have been praying and others have been praying and asking God to show us what is wrong with Hope? You may be thinking that by now, God would have already healed her, or that answers would have come. There is one thing that I have learned through this process, among many things, God's timing and His ways are not always our ways. We want it NOW and God is patient and teaches us patience, yet he reminds us that he will never leave us nor forsake us.
Just this past month I have seen Hope's health decline, the fatigue is back (sleeping about 16 hours per day), the body aches and the joint pain is high, the first week of April she had a 3.5 day migraine all the way up to the day before Prom and went to prom with a headache, nausea, upper back and shoulder pain, bloating in the abdominal, abdominal pain, cold hands and cold feet, sweaty palms, hot flashes, the list goes on, basically a 40 something year old in a 17 year old body!
I started my research process again, wondering what could be left? I searched the symptoms again, joined private forums of different illnesses, and came across a thyroid condition known as Wilson's Syndrome. Basically it is where you have hypothyroidism and low body temperature because your T4 is not transferring to T3. Could that be it? Well you got to find a doctor that knows about Wilson's Syndrome first! The search led me to a doctor in Birmingham, or at least to do some of the testing that I needed done, in the meantime I am keeping a record of her body temperature which on average is 97.6.
We go the appointment to the doctor in Birmingham that I had made with a General Practitioner because I just needed some extensive thyroid testing done and this one was very familiar with Wilson's Syndrome. While we were at this appointment the young doctor keeps referring to his dad and his dad's practice, then makes the comment, "as an Internist I am very intrigued and would like to study more to diagnosis Hope." I was thinking to myself, What? Internal Medicine? They ran even more blood test for RA, Celiac's Disease, Lyme, and Mal-Absorption. I came home that evening and went to the website and realized I did indeed make the appointment with the dad, but they gave me the son! (dad is a GP and son is an Internal Medicine dr which led to more test)! Call me crazy but God had moved on Hope's behalf!
I decided it was time for yet another plea for FB friends to please continue to pray, a friend messaged me and said I have a couple of friends and their illnesses sound like Hope's, will you friend them on FB, and talk to them, Sure! Within minutes a had a "new" friend. She began telling me how she went from Doctor to doctor, has a thyroid problem, basically mis-diagnosised for years! Then she said, you know "one day you have a headache, the next day you have incredible body aches, the next your stomach hurts, then the next day you think you are a hypochondriac!" I thought that is the way Hope feels, one day it is one thing, then something else, then it moves again!!!!
My "new" friend has Lyme disease. Wait! What? Hope was tested for Lyme disease, the test were Normal! So there is no way that Hope can have Lyme was my thinking. My "new" friend told me to join some more of the Lyme support groups and talk to several other Lyme patients, I quickly learned a lot about Lyme.
When I start reading the post about other Lyme patients and testing through a lab in California, I thought wait, I have heard of that lab. Then I remembered about 6 months ago a high school friend of my husbands had messaged him and told him that it sounded like Lyme and that we needed to have her tested through Igenex. But she has been tested for Lyme!, and the endocrinologist said, "Good news No Lyme", then I remembered back to me calling the office that day about 1 panel being positive!!!!!!! (remember but the nurse said that the CDC stated that 5 bands have to be positive for it to be Lyme, so if Dr ______ says you don't have Lyme then she don't have Lyme)!
God moves on our behalf even when we don't know it......
Read more of the story....
Showing posts with label fatigue. Show all posts
Showing posts with label fatigue. Show all posts
Monday, May 27, 2013
In the beginning a flu-like Zombie!
Where to even begin? This chapter of our journey as a family beings in the fall of 2011. As a mom I can remember my teenage daughter looking forward to her sweet 16th birthday just like every other teenager does, getting your license, dreaming of more clothing, cars, dating and boys! Except the fact that she had these flu like symptoms that really just did not want to go away. For almost 2-3 weeks the symptoms just kept lingering and as a mom I tried everything and kept thinking I have to get her well for her sweet 16 birthday party because on 11/11/11 she turns 16!
Sure enough she got to go and enjoy her own birthday party with family and friends, bonfire, movie under the stars, food all the things teenager like, she still did not feel good but she attended the event. Still attending school but as soon as she came home in the afternoons, a nap was in order! She even felt too tired and sick to get her drivers license! She rested over Thanksgiving break and Christmas break was coming soon, but of course as a high school student final exams were in order. This is the day that is vivid in my memory as a parent with a child with an un-diagnosis illness, the last day of school for Christmas break 2011, she attended school took her final exam and spent the night with a friend. The next day, mid-morning she came home and that was it.....Zombie!
As a parent, at first I thought it was just exhaustion from a full semester of AP classes, teenage wipe out tiredness, and just needed more rest, WRONG! Hope started sleeping 12 hours, then the 12 wasn't enough then 16-18 hours per day and wake up exhausted!!! Needless to say I thought she is probably just sleeping too much and needs some exercise to get her going again. I would go in and check on her, to make sure she is alright, but here is one of the keys to this whole journey I am about to tell you. When I would put my hand on her forehead to check for temperature, she would be normal, no big deal, thermometer reading usually in the 98.0-98.9 range, but her hands were cold as ice! Yes it was December, Yes the heat was on, but she was like ice! Not long after the flu like symptoms started to fade and just an average cold with a runny nose still lingered then came an infection, one that raised attention of the attending pediatric doctor at the time, and needed two anti-biotics and an anti-biotic cream to heal, but after two sonograms the doctor assured me that it was no cancerous, but possibly a staph infection.
December 2011 was when all of the doctors visits started with what many doctors have labeled her as their "mystery patient". Right in the middle of Christmas festivities we had many doctor visits to a local pediatrics numerous blood test, and the two sonograms, with a simple comment, "Mrs Nichols your daughters medical blood test are normal!"
Normal that is a word over the past year and half of our lives that I do not like and have come to realize that in the medical field it is thrown around quite often!!!
Normal? Mild fever, runny nose, body aches, fatigue, headaches.....normal? My thoughts as a parent, Doc I don't know what YOU think is NORMAL but this AIN'T NORMAL!
Read more of the story...
Sure enough she got to go and enjoy her own birthday party with family and friends, bonfire, movie under the stars, food all the things teenager like, she still did not feel good but she attended the event. Still attending school but as soon as she came home in the afternoons, a nap was in order! She even felt too tired and sick to get her drivers license! She rested over Thanksgiving break and Christmas break was coming soon, but of course as a high school student final exams were in order. This is the day that is vivid in my memory as a parent with a child with an un-diagnosis illness, the last day of school for Christmas break 2011, she attended school took her final exam and spent the night with a friend. The next day, mid-morning she came home and that was it.....Zombie!
As a parent, at first I thought it was just exhaustion from a full semester of AP classes, teenage wipe out tiredness, and just needed more rest, WRONG! Hope started sleeping 12 hours, then the 12 wasn't enough then 16-18 hours per day and wake up exhausted!!! Needless to say I thought she is probably just sleeping too much and needs some exercise to get her going again. I would go in and check on her, to make sure she is alright, but here is one of the keys to this whole journey I am about to tell you. When I would put my hand on her forehead to check for temperature, she would be normal, no big deal, thermometer reading usually in the 98.0-98.9 range, but her hands were cold as ice! Yes it was December, Yes the heat was on, but she was like ice! Not long after the flu like symptoms started to fade and just an average cold with a runny nose still lingered then came an infection, one that raised attention of the attending pediatric doctor at the time, and needed two anti-biotics and an anti-biotic cream to heal, but after two sonograms the doctor assured me that it was no cancerous, but possibly a staph infection.
December 2011 was when all of the doctors visits started with what many doctors have labeled her as their "mystery patient". Right in the middle of Christmas festivities we had many doctor visits to a local pediatrics numerous blood test, and the two sonograms, with a simple comment, "Mrs Nichols your daughters medical blood test are normal!"
Normal that is a word over the past year and half of our lives that I do not like and have come to realize that in the medical field it is thrown around quite often!!!
Normal? Mild fever, runny nose, body aches, fatigue, headaches.....normal? My thoughts as a parent, Doc I don't know what YOU think is NORMAL but this AIN'T NORMAL!
Read more of the story...
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