Allow me to first introduce myself! My name is Maren, and I've been a regular lurker on this wonderful website for about three years. The personal stories written here have been a continual inspiration on this medical journey of mine, and on many occasions, has helped me to continue trying to figure out my problem.
I've finally decided to crawl out of the shadows due to pure frustration, and a need for the community's wisdom. I've come to a dead end, and it's gotten to the point where my doctors seem to simply have no idea what to do with me.
This may be somewhat of a longer post, given that my battle with this unknown illness has been a long-time coming, so I apologize if that may be the case. =D
I am a 22 year old female, who, over 8 years, has struggled with mystery symptoms that seem to evolve almost daily now. And it all began with an incredible exhaustion that caused me to exit high-school early on my senior year, simply because I hadn't the strength to continue. The evolving pain also forced me to abandon my cello (the love of my life), which I had studied for 9 years prior, due to terrible progressive hand pain. It still sits in my closet, left relatively untouched now for four years.
As time progressed, so did the symptoms, which were generally "vague" at first: Muscle pain, joint pain, exhaustion, and weakness. Doctors seemed uninterested, and rarely performed any tests.
It wasn't until about three years ago when the symptoms became more interesting. I developed a light rash across my face when exposed to sunlight, the joint-pain intensified, and I began to experience low grade fevers.
Today, I have a strange list of symptoms, each one seemingly unrelated to the other. This generally baffles every doctor I've visited (and I've seen quite a few now). Some of these symptoms are incredibly frustrating in nature, if only because they seem so out of place to everything else. I am a born researcher, and the only illness that ever seems to share the strange list of symptoms that crop up is Lupus.
If I may, I would share that list with you now, as it currently stands:
-weakness
-join pain, without swelling
-muscle pain
-low grade fevers
-glandular swelling
-raynauds phenomenon
-sensitivity to sunlight
-light molar rash
-weight loss
-chronically swollen eyelids
-petechiae rash (which started off mild, and now covers my arms. It seems to be spreading to my legs now as well)
-diarrhea
-painful mouth and nose ulcers
-strange, red bumps that itch at first, and later become a dark, dark red color (these seem to be happening with more frequency lately)
My test results are generally rather varied. I've had four ANA tests done in the past three years, two of which were positive, the other two, negative. My white blood cell count is currently on the very low end of normal, and I never seem to obtain a Sed Rate test above "1".
The only significant blood result I've received was one which indicated that I had absolutely zero vitamin D in my system. I have been under treatment for that for the past year or so, and have seen little improvement in my symptoms over all, sadly (In fact, since then, I've developed the petechiae and red bumps). I had so hoped that a vitamin D deficiency would be the answer to all of my problems. Neither my regular doctor or my Rhuemetologist know what could possibly be keeping my body from properly storing vitamin D.
As a precaution, I am now regularly taking multi-vitamins, particularly B vitamins, to rule out any other possible deficiencies that may be at play.
On another note, something which seems to keep me from any serious diagnoses is the fact that I have no joint swelling whatsoever. Even though the pain can be quite severe. I've noticed that Rhuemys tend to develop a certain level of distain towards the lack of swelling in their line of work. XD
And as winter quickly approaches, that joint pain is returning with a vengeance.
My doctors are frustrated, as I am. Yet they generally don't ask for many blood tests anymore. Where do I go from here? What do I ask? What other blood tests could be beneficial in finding my diagnosis?
Let me thank you ahead of time for any responses that I receive. You are a very kind community of people, and I thank you from the bottom of my heart, simply for having had read this. Writing itself can be quite therapeutic.
Sincerely,
Maren
I've finally decided to crawl out of the shadows due to pure frustration, and a need for the community's wisdom. I've come to a dead end, and it's gotten to the point where my doctors seem to simply have no idea what to do with me.
This may be somewhat of a longer post, given that my battle with this unknown illness has been a long-time coming, so I apologize if that may be the case. =D
I am a 22 year old female, who, over 8 years, has struggled with mystery symptoms that seem to evolve almost daily now. And it all began with an incredible exhaustion that caused me to exit high-school early on my senior year, simply because I hadn't the strength to continue. The evolving pain also forced me to abandon my cello (the love of my life), which I had studied for 9 years prior, due to terrible progressive hand pain. It still sits in my closet, left relatively untouched now for four years.
As time progressed, so did the symptoms, which were generally "vague" at first: Muscle pain, joint pain, exhaustion, and weakness. Doctors seemed uninterested, and rarely performed any tests.
It wasn't until about three years ago when the symptoms became more interesting. I developed a light rash across my face when exposed to sunlight, the joint-pain intensified, and I began to experience low grade fevers.
Today, I have a strange list of symptoms, each one seemingly unrelated to the other. This generally baffles every doctor I've visited (and I've seen quite a few now). Some of these symptoms are incredibly frustrating in nature, if only because they seem so out of place to everything else. I am a born researcher, and the only illness that ever seems to share the strange list of symptoms that crop up is Lupus.
If I may, I would share that list with you now, as it currently stands:
-weakness
-join pain, without swelling
-muscle pain
-low grade fevers
-glandular swelling
-raynauds phenomenon
-sensitivity to sunlight
-light molar rash
-weight loss
-chronically swollen eyelids
-petechiae rash (which started off mild, and now covers my arms. It seems to be spreading to my legs now as well)
-diarrhea
-painful mouth and nose ulcers
-strange, red bumps that itch at first, and later become a dark, dark red color (these seem to be happening with more frequency lately)
My test results are generally rather varied. I've had four ANA tests done in the past three years, two of which were positive, the other two, negative. My white blood cell count is currently on the very low end of normal, and I never seem to obtain a Sed Rate test above "1".
The only significant blood result I've received was one which indicated that I had absolutely zero vitamin D in my system. I have been under treatment for that for the past year or so, and have seen little improvement in my symptoms over all, sadly (In fact, since then, I've developed the petechiae and red bumps). I had so hoped that a vitamin D deficiency would be the answer to all of my problems. Neither my regular doctor or my Rhuemetologist know what could possibly be keeping my body from properly storing vitamin D.
As a precaution, I am now regularly taking multi-vitamins, particularly B vitamins, to rule out any other possible deficiencies that may be at play.
On another note, something which seems to keep me from any serious diagnoses is the fact that I have no joint swelling whatsoever. Even though the pain can be quite severe. I've noticed that Rhuemys tend to develop a certain level of distain towards the lack of swelling in their line of work. XD
And as winter quickly approaches, that joint pain is returning with a vengeance.
My doctors are frustrated, as I am. Yet they generally don't ask for many blood tests anymore. Where do I go from here? What do I ask? What other blood tests could be beneficial in finding my diagnosis?
Let me thank you ahead of time for any responses that I receive. You are a very kind community of people, and I thank you from the bottom of my heart, simply for having had read this. Writing itself can be quite therapeutic.
Sincerely,
Maren
