Aa
What could be wrong with me?
Please, can anyone help me find answers? Something is amiss with me, but I haven't been able to locate anyone who can tell me what, or how to fix it.
I'll start at the beginning. Per my mother, I was, "very sick," when I was born. Although she has been unable to give me more details, she has told me that I had to be given immune factor, so I don't know what type, in what quantities, for what malady, etc. In toddlerhood, I contracted what we believe to be hepatitis A, as well as mononucleosis. According to my mother, I was dangerously ill & the doctors told her I wouldn't live to see my next (2nd ?) birthday. However, I survived. Despite this, throughout my entire life, I have been plagued by
a number of problems, some seemingly related to others, some not.
At about the age of 8, I began to experience episodes of terrible vertigo which would leave me bedridden for an average of at least three days each time an episode occurred. An ENT diagnosed me with Meniere's disease; I have long since been made aware that this is a malady typically diagnosed in adulthood. In any event, I have continued to experience episodes of vertigo over the years. The last one occurred in 2002 &, although the vertigo was ultimately mild in comparison to my typical attacks after the acute phase remitted, it lasted for several months, leading me to suspect an acoustic neuroma, which was eventually ruled out. However, my ENT at the time opined that what I was experiencing was actually viral vestibular neuronitis. The symptoms eventually abated, but not before it cost me my job.
Allergies, ear infections, & other upper respiratory infections have also plagued me for much of my life. In fact, the only issue that hasn't persisted is the issue of ear infections. However, this remitted only after a bizarre bilateral hemorrhagic ear infection which left me functionally deaf in my left ear.
Unrelenting fatigue is now a daily constant in my life. In my early 20s, I used to run between five & eight miles a night, at least five nights a week. Now, on the days that I can actually find the energy to get out of bed to get ready for work, my energy levels are awful. I find myself falling asleep behind the wheel and at work. I'm so exhausted all of the time that I have difficulty just accomplishing the minimum I need to do while I'm at work, and I have a desk job!!! Despite this, I have no energy to do anything else when I get home from work in the evenings except climb into bed and go to sleep. There have been times that I have slept for 12-14 hours straight with no sense of relief upon awakening. I am sapped & exhausted all of the time. My husband has resorted to accusing me of being lazy & unmotivated. However, it is important to note that I worked my way through both undergrad and graduate school full-time while holding down at least one full-time job in addition to one or more part-time jobs, all the while raising two young children. In spite of this, I am in danger of losing my marriage, my home & my family. Any exertion - physical or mental - results in extreme physical debilitation & requires a tremendous amount of time for recovery. This has resulted in difficulty spending time with anyone else.
I have a history of episodes of ischemic colitis and shingles, and now more recently, I have been diagnosed with palpitations & vasovagal syncope, etiology unknown. At the time I began experiencing the latter, I was physically active, engaging in strength training at the gym using weights. I've worn a holter monitor twice in an attempt to identify any abnormalities with my heart which might be to blame for the VVS, but to no avail. I've also undergone EKG, stress testing, tilt table testing, and TEE. I believe the tilt table test was positive, and at least one holter monitor demonstrated one or more episodes of tachycardia, but nothing else that was notable enough for the cardiologist to inform me. Of note, my cardiologist has also advised that I suffer from a potassium deficiency, prescribing potassium supplements. The shingles eventually resolved, & a post-incident colonoscopy thankfully failed to demonstrate any gangrenous necrosis seocndary to the ischemic colitis.
Earlier I mentioned that I suffer from numerous allergies. I still do, and my skin sensitivities have figured heavily in this regard over the years. I was a young adult before the severe eczema that had plagued me all of my life until that point finally relented. However, I have continued to experience what I can only describe as some sort of sun sensitivity. I have had issues with rashes on exposure to the sun, one of the most severe of which was diagnosed by my family doctor as phytophotodermatitis. However, I have never agreed with this diagnosis as there was no consumption of fruit or vegetables of any kind, nor was there any exposure to the juices of any fruits or vegetables in the weeks preceding the severe rash that occurred on exposure to the sun. I also experience a strange affliction which causes the glaborous skin of my fingers to itch, split and peel. I have occasionally experienced something similar on my feet. I also have issues with recurrent pinpoint hemorrhages beneath my skin all over my body with no apparent cause. I also have recently experienced systemic fungal infection of one of my great toenails.
There is also the issue of frequent and recurrent elevated temperature with no identifiable cause. I frequently experience bouts of subjective fever and chills, substantiated by an elevated temperature as measured by a fever thermometer. My body temperature fluctuates between normal and febrile, hovering at those times near or in excess of 100 to 101 degrees. Additionally, I have experienced intermittent episodes of both night sweats and cold sweats during the day. PPD skin test for TB has been repeatedly negative.
I also suffer from recurrent, tender axillary and groin lymph nodes, although more commonly the former despite use of preventive measures with Betadine, Hibiclens, etc. There have been times that these have progressed to cellulitis.
I have noticed that my cognitive functioning is also impaired, & I suffer from issues with both short- & long-term memory & concentration. Additionally, I frequently experience headaches not of the pain or type to which I am typically accustomed. These began about a year or so ago. I have also experienced "electric shock" type sensations in the upper legs & forearms not related to exercise or any other type of exertion.
Joint & bone pain are also issues for me, but without swelling or redness. This occurred in my left foot for about a week last year between 2/28/09 and 3/5/09, as well as in my hip joints. The left foot & lower leg pain recently recurred about three weeks ago - again in the absence of any injury - & persist to the present time.
I also have a history of uterine adenoma (I know these are fairly common) & endometrial hyperplasia requiring endometrial ablation.
Of note, multiple blood tests for thyroid function have been negative, so any potential thyroid dysfunction diagnosed by such tests has been repeatedly ruled out.
Finally, I suffer from chronic dry eye issues. In 2007, my eye dryness was so severe it prompted my ophthalmologist to perform bilateral punctal occlusions in an attempt to relieve my severely dry eyes. She also prescribed Restasis. Although these measures have improved the situation somewhat, I still experience signs and symptoms of dry eye.
Taken individually, I know that any and all of these maladies can be explained as a temporary disruption of the organ system involved. However, I have difficulty believing that my body could continue to malfunction in the aforementioned manner in the absence of some common dysfunction which could affect most, if not all, of these systems. Do you have any answers for me?
I'll start at the beginning. Per my mother, I was, "very sick," when I was born. Although she has been unable to give me more details, she has told me that I had to be given immune factor, so I don't know what type, in what quantities, for what malady, etc. In toddlerhood, I contracted what we believe to be hepatitis A, as well as mononucleosis. According to my mother, I was dangerously ill & the doctors told her I wouldn't live to see my next (2nd ?) birthday. However, I survived. Despite this, throughout my entire life, I have been plagued by
a number of problems, some seemingly related to others, some not.
At about the age of 8, I began to experience episodes of terrible vertigo which would leave me bedridden for an average of at least three days each time an episode occurred. An ENT diagnosed me with Meniere's disease; I have long since been made aware that this is a malady typically diagnosed in adulthood. In any event, I have continued to experience episodes of vertigo over the years. The last one occurred in 2002 &, although the vertigo was ultimately mild in comparison to my typical attacks after the acute phase remitted, it lasted for several months, leading me to suspect an acoustic neuroma, which was eventually ruled out. However, my ENT at the time opined that what I was experiencing was actually viral vestibular neuronitis. The symptoms eventually abated, but not before it cost me my job.
Allergies, ear infections, & other upper respiratory infections have also plagued me for much of my life. In fact, the only issue that hasn't persisted is the issue of ear infections. However, this remitted only after a bizarre bilateral hemorrhagic ear infection which left me functionally deaf in my left ear.
Unrelenting fatigue is now a daily constant in my life. In my early 20s, I used to run between five & eight miles a night, at least five nights a week. Now, on the days that I can actually find the energy to get out of bed to get ready for work, my energy levels are awful. I find myself falling asleep behind the wheel and at work. I'm so exhausted all of the time that I have difficulty just accomplishing the minimum I need to do while I'm at work, and I have a desk job!!! Despite this, I have no energy to do anything else when I get home from work in the evenings except climb into bed and go to sleep. There have been times that I have slept for 12-14 hours straight with no sense of relief upon awakening. I am sapped & exhausted all of the time. My husband has resorted to accusing me of being lazy & unmotivated. However, it is important to note that I worked my way through both undergrad and graduate school full-time while holding down at least one full-time job in addition to one or more part-time jobs, all the while raising two young children. In spite of this, I am in danger of losing my marriage, my home & my family. Any exertion - physical or mental - results in extreme physical debilitation & requires a tremendous amount of time for recovery. This has resulted in difficulty spending time with anyone else.
I have a history of episodes of ischemic colitis and shingles, and now more recently, I have been diagnosed with palpitations & vasovagal syncope, etiology unknown. At the time I began experiencing the latter, I was physically active, engaging in strength training at the gym using weights. I've worn a holter monitor twice in an attempt to identify any abnormalities with my heart which might be to blame for the VVS, but to no avail. I've also undergone EKG, stress testing, tilt table testing, and TEE. I believe the tilt table test was positive, and at least one holter monitor demonstrated one or more episodes of tachycardia, but nothing else that was notable enough for the cardiologist to inform me. Of note, my cardiologist has also advised that I suffer from a potassium deficiency, prescribing potassium supplements. The shingles eventually resolved, & a post-incident colonoscopy thankfully failed to demonstrate any gangrenous necrosis seocndary to the ischemic colitis.
Earlier I mentioned that I suffer from numerous allergies. I still do, and my skin sensitivities have figured heavily in this regard over the years. I was a young adult before the severe eczema that had plagued me all of my life until that point finally relented. However, I have continued to experience what I can only describe as some sort of sun sensitivity. I have had issues with rashes on exposure to the sun, one of the most severe of which was diagnosed by my family doctor as phytophotodermatitis. However, I have never agreed with this diagnosis as there was no consumption of fruit or vegetables of any kind, nor was there any exposure to the juices of any fruits or vegetables in the weeks preceding the severe rash that occurred on exposure to the sun. I also experience a strange affliction which causes the glaborous skin of my fingers to itch, split and peel. I have occasionally experienced something similar on my feet. I also have issues with recurrent pinpoint hemorrhages beneath my skin all over my body with no apparent cause. I also have recently experienced systemic fungal infection of one of my great toenails.
There is also the issue of frequent and recurrent elevated temperature with no identifiable cause. I frequently experience bouts of subjective fever and chills, substantiated by an elevated temperature as measured by a fever thermometer. My body temperature fluctuates between normal and febrile, hovering at those times near or in excess of 100 to 101 degrees. Additionally, I have experienced intermittent episodes of both night sweats and cold sweats during the day. PPD skin test for TB has been repeatedly negative.
I also suffer from recurrent, tender axillary and groin lymph nodes, although more commonly the former despite use of preventive measures with Betadine, Hibiclens, etc. There have been times that these have progressed to cellulitis.
I have noticed that my cognitive functioning is also impaired, & I suffer from issues with both short- & long-term memory & concentration. Additionally, I frequently experience headaches not of the pain or type to which I am typically accustomed. These began about a year or so ago. I have also experienced "electric shock" type sensations in the upper legs & forearms not related to exercise or any other type of exertion.
Joint & bone pain are also issues for me, but without swelling or redness. This occurred in my left foot for about a week last year between 2/28/09 and 3/5/09, as well as in my hip joints. The left foot & lower leg pain recently recurred about three weeks ago - again in the absence of any injury - & persist to the present time.
I also have a history of uterine adenoma (I know these are fairly common) & endometrial hyperplasia requiring endometrial ablation.
Of note, multiple blood tests for thyroid function have been negative, so any potential thyroid dysfunction diagnosed by such tests has been repeatedly ruled out.
Finally, I suffer from chronic dry eye issues. In 2007, my eye dryness was so severe it prompted my ophthalmologist to perform bilateral punctal occlusions in an attempt to relieve my severely dry eyes. She also prescribed Restasis. Although these measures have improved the situation somewhat, I still experience signs and symptoms of dry eye.
Taken individually, I know that any and all of these maladies can be explained as a temporary disruption of the organ system involved. However, I have difficulty believing that my body could continue to malfunction in the aforementioned manner in the absence of some common dysfunction which could affect most, if not all, of these systems. Do you have any answers for me?
It sounds alot like sjogren's. I had been tested for 5 years by 5 different Dr.s. The bloodwork always came back negative. Finally someone told me that a small precentage of positive sjogren's patients bloodwork comes out negative. I am one of those. So the only 100% is bioposy. Had it done and yes I have Sjogren's. Please get blood tested for it and if negtive consider bioposy. Good luck. : )
Hi and welcome to MedHelp. Sorry to hear of your life-long health problems.
With all the testing, have they tested you for an autoimmune disease. The first one I thought of was Sjorgrens. It too can cause joint and muscle problems. But it is not uncommon for someone w/ one AI to have others as well.
What was the result of the tilt table? You said it was positive. Did your heart rate increase or drop? Did they tell you the results of the test...what they meant or pointed to.
With all the testing, have they tested you for an autoimmune disease. The first one I thought of was Sjorgrens. It too can cause joint and muscle problems. But it is not uncommon for someone w/ one AI to have others as well.
What was the result of the tilt table? You said it was positive. Did your heart rate increase or drop? Did they tell you the results of the test...what they meant or pointed to.
Hey Sounds like you have really been through the ringer. I really felt for you when you said that you were losing your family, job, home etc. I too have been plagued by many strange symptoms and no diagnosis and it is hard on us socially. My husband and I were on the rocks for a long time because no doctor would confirm my illness, however, my husband knows how sick I was. I had to call on my mother to help me with my kids and subsequently she lost her job. That is a heavy burden for me to carry but without her help i do not know what i would have done. I just recently started having this rash from the sun. I went to my dermatologist today and she is testing it for Lupus rash. I am unsure if this is what i have but I have many symptoms of it. I pray you get some answers and get to feeling better!
Hugs,
Dawn
Hugs,
Dawn
i also have the joint and muscle aches, serious fatigue (same as you, can sleep 14-16 hours easy), dry eye, also dry nose, now throat dryness and burning too. I plan on being tested for sjogrens, as i have alot of the same symptoms. You might ask your doctor to test for that as well --couldn't hurt to rule it out. Its also an auto immune disorder. I surely hope you can get a quick and proper diagnosis and proper care asap!
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