Aa
sorry so long-can anyone shed some light on what may be wrong with me??
PLEASE HELP. i'm a 27 yr. old female and i have had health problems all my
life. when i was a child, i was constantly contracting sinus infections every
few weeks, and when i would get sick, it was always extremely severe. when i
got chicken pox at age 5, i was sick for 2 weeks, had a temp of 104,
hallucenations, and pox over every square inch of my body, including scalp and
genitals. when i was in middle school, it was discovered that i had a heart
arrythmia with tachycardia and PVC's. on one halter test, i had 22,000 PVC's in
24 hours. it was decided this was probably a congenital defect, but i was
really never given a diagnoses what the actual cause of it was, even though i
went to several cardiologists. i had an EP study which came back normal. i
have suffered with severe depression and anxiety since age 13 and was on almost every anti
depressant at one time or another, attended inpatient, outpatient, and
individual counseling for many years.
in 2004, at age 23, i had some breathing issues, and chest pain i thought
was indigestion. i finally went to my PC Dr.,and was told i had pneumonia and
was having asthma attacks (which i had never had prior). after steroids,
antibiotics, and the frequent use of a home nebulizer, my breathing was back to
normal after a few weeks, except for the i do have to use my inhaler still, but
very rarely. soon after, i noticed chronic pain in my muscles, lower back, and
joints and TMJ symptoms. i was also having extremely heavy periods that would
last about 3 weeks, and was passing baseball sized clots. i had things checked
out downstairs, and in the few tests i've had since then, they've found several
cysts which have come and gone, and most recently, polyfolicular cysts, "
unknown deposits of calcium" in my uterus, and a possible blocked fallopian tube. i was put on Yasmin, which corrected the
bleeding and things were ok for awhile.
then in 2006, i noticed my blood pressure, whch was usually on the low side
was very high. i went to my PC dr. and the cardiologist who had been treating
me since i was 14, and blood tests were conducted which revealed i was
hyperthyroid and also had cardiomyopathy. my ejection fraction was about 40%.
2 yrs. prior, it was 60%. i was given meds for the hyperthyroidism and put on
300 mg. a day of Toporol to slow my heart rate to prevent any further weakening
of my heart, and told i may or may not regain strength in my heart function.
shortly after, my thyroid went from over active to underactive (i was not still
on the heperthyroid meds at the time of the blood tests). my ejection fraction
came up to 50% and the cardiologist told me it was "probably a viral infection
of the heart". i lost all desire for sexual activity and have still not
regained ANY of it back. it just disappeared almost overnight. i was also diagnosed by a rehumooligist as having fibromyalgia
which was
causing the chronic pain along with the added joint and muscle pain associated
with the hypothyroidism. it took almost 2 years for the dr. to get me on the
correct dose of Synthroid (75 mcg) that my TSH level finally was normal. i
still have the symptoms of hypothyroidism even though my blood tests have been
normal for about 6 mo. most recently, my sleep cycle has changed because i have
sleep paralysis and night terrors, so i sleep during the day because sleeping at
night scares me. i had a sllep study which was deemed inconclusive because i
awoke 98 times in 6 hours and never reached REM sleep. i also have about 70
psoriasis ( that runs on my father's side) plaques that cover my arms and legs
and are extremely resistant to treatment.
i look and feel like a mess. my whole life has been effected greatly by
all of this, and i'm constantly waiting for "the next thing to go wrong with me"
while trying to deal with the pain, stress, and depression. i lost my job and had to withdraw from
college because of frequent absences due to one thing or another with my health.
i know this all has to be related somehow and it's autoimmune. i have done
hours upon hours of research, and seen many dr.'s and have not come up with a
name or diagnosis or reason why i'm 27 and i feel like i'm 80.
can you possibly shed any light on how these symptoms may be connected, or
what the dr's may be missing. just having a name of a condition and/or
suggestions of other tests the dr. can look into would give me so much hope, and
and give me some of my happiness back. my marriage is suffering because of the
lack of sexual desire, the financial burden i've become (last year, i spent
$3,000 on prescription medications alone) , the time and energy that is put into
making appointments with all these specialists and testing. plus the fact i'm
so tired all the time, sleep most of the day, and don't feel well enough to go
out and do things 90% of the time. PLEASE, please, help me. thank you for your time.
-Becky
life. when i was a child, i was constantly contracting sinus infections every
few weeks, and when i would get sick, it was always extremely severe. when i
got chicken pox at age 5, i was sick for 2 weeks, had a temp of 104,
hallucenations, and pox over every square inch of my body, including scalp and
genitals. when i was in middle school, it was discovered that i had a heart
arrythmia with tachycardia and PVC's. on one halter test, i had 22,000 PVC's in
24 hours. it was decided this was probably a congenital defect, but i was
really never given a diagnoses what the actual cause of it was, even though i
went to several cardiologists. i had an EP study which came back normal. i
have suffered with severe depression and anxiety since age 13 and was on almost every anti
depressant at one time or another, attended inpatient, outpatient, and
individual counseling for many years.
in 2004, at age 23, i had some breathing issues, and chest pain i thought
was indigestion. i finally went to my PC Dr.,and was told i had pneumonia and
was having asthma attacks (which i had never had prior). after steroids,
antibiotics, and the frequent use of a home nebulizer, my breathing was back to
normal after a few weeks, except for the i do have to use my inhaler still, but
very rarely. soon after, i noticed chronic pain in my muscles, lower back, and
joints and TMJ symptoms. i was also having extremely heavy periods that would
last about 3 weeks, and was passing baseball sized clots. i had things checked
out downstairs, and in the few tests i've had since then, they've found several
cysts which have come and gone, and most recently, polyfolicular cysts, "
unknown deposits of calcium" in my uterus, and a possible blocked fallopian tube. i was put on Yasmin, which corrected the
bleeding and things were ok for awhile.
then in 2006, i noticed my blood pressure, whch was usually on the low side
was very high. i went to my PC dr. and the cardiologist who had been treating
me since i was 14, and blood tests were conducted which revealed i was
hyperthyroid and also had cardiomyopathy. my ejection fraction was about 40%.
2 yrs. prior, it was 60%. i was given meds for the hyperthyroidism and put on
300 mg. a day of Toporol to slow my heart rate to prevent any further weakening
of my heart, and told i may or may not regain strength in my heart function.
shortly after, my thyroid went from over active to underactive (i was not still
on the heperthyroid meds at the time of the blood tests). my ejection fraction
came up to 50% and the cardiologist told me it was "probably a viral infection
of the heart". i lost all desire for sexual activity and have still not
regained ANY of it back. it just disappeared almost overnight. i was also diagnosed by a rehumooligist as having fibromyalgia
which was
causing the chronic pain along with the added joint and muscle pain associated
with the hypothyroidism. it took almost 2 years for the dr. to get me on the
correct dose of Synthroid (75 mcg) that my TSH level finally was normal. i
still have the symptoms of hypothyroidism even though my blood tests have been
normal for about 6 mo. most recently, my sleep cycle has changed because i have
sleep paralysis and night terrors, so i sleep during the day because sleeping at
night scares me. i had a sllep study which was deemed inconclusive because i
awoke 98 times in 6 hours and never reached REM sleep. i also have about 70
psoriasis ( that runs on my father's side) plaques that cover my arms and legs
and are extremely resistant to treatment.
i look and feel like a mess. my whole life has been effected greatly by
all of this, and i'm constantly waiting for "the next thing to go wrong with me"
while trying to deal with the pain, stress, and depression. i lost my job and had to withdraw from
college because of frequent absences due to one thing or another with my health.
i know this all has to be related somehow and it's autoimmune. i have done
hours upon hours of research, and seen many dr.'s and have not come up with a
name or diagnosis or reason why i'm 27 and i feel like i'm 80.
can you possibly shed any light on how these symptoms may be connected, or
what the dr's may be missing. just having a name of a condition and/or
suggestions of other tests the dr. can look into would give me so much hope, and
and give me some of my happiness back. my marriage is suffering because of the
lack of sexual desire, the financial burden i've become (last year, i spent
$3,000 on prescription medications alone) , the time and energy that is put into
making appointments with all these specialists and testing. plus the fact i'm
so tired all the time, sleep most of the day, and don't feel well enough to go
out and do things 90% of the time. PLEASE, please, help me. thank you for your time.
-Becky
I am so sorry you are suffering with this at such a young age. You mentioned you have psoriasis. Could it be psoriatic arthritis? I know a young girl, 15, who has this and it does cause a lot of symptoms throughout the body. The heart issues, I'm not sure.
Can you try another rheumatologist? Also, you need a good primary care doctor who can try to help you manage everything. It is frustrating to go from doctor to doctor for different things, and no one puts it all together.
What about a university teaching hospital? Maybe someone there might be able to help you figure it all out. I assume you have insurance. Do your parents help you, or a boyfriend or husband? I hope you're not alone.
Can you try another rheumatologist? Also, you need a good primary care doctor who can try to help you manage everything. It is frustrating to go from doctor to doctor for different things, and no one puts it all together.
What about a university teaching hospital? Maybe someone there might be able to help you figure it all out. I assume you have insurance. Do your parents help you, or a boyfriend or husband? I hope you're not alone.
wow! What a list, I feel for you. Check out immed.org. This group is on the fringes of medical science. They are doing a lot of research on autoimmune diseases. They actually have a therory that a host of pathegeons called mycoplasmas may be ressponsible for a lot of the autoimmune diseases out there.
Good luck!
Good luck!
You could also be having some really bad cumulative and interactive effects from the vast array of meds you are on. You see so many MDs and they generally don't pay attention to what one another has prescribed. Have your MDs also checked your pituitary, adrenals and thymus glands? Disorders with these can also cause some of the problems you describe.
I was diagnosed two or three years ago with Sjogrens, and Autoimmune Reocurring Apthous Stomatitis. I have been taking Imuran, and a was treated with high doses of prednisone for " Flares" . My doctor recently decided to keep me on a low dose of prednisone daily. this seems to have kept my symptoms and flares in check, and rarely have a big flare. Have you talked to your doctor about this?
yes, i saw an endochrinologist, and she ran tests on my thyroid, but by the time i had gotten to her, the family dr. had finally gotten me on the right dosage of synthroid. she didn't want to listen to anything i had to say... i think i was in there for maybe 15 mins, and she didn't want to hear about anything except my thyroid. i see my family dr, a ruemotologist, a cardiologist, a psychiatrist, a dermatologist, a neurologist (who was just as awful as the endochrinologist), and an opthamologist. i'm in the emergency room at least once every 2 months, and even though i've tried to convey my frustrations with the fact my body seems to be attacking itself, none of these dr's have put all of my symptoms together and came up with any kind of diagnosis. they all treat whatever symptom happens to be in their field of medicine. i currently take effexor, elavil, adderall, mobic, percoset, skelaxin, toporol, xanax, synthroid, rozerem, taclonex (topical ointment), imitrex, furrosomide, b12 &folic acid. and in the last year have been on and stopped taking depakote, neurontin, quinipril, zyrtec, ultram, avinza (time release morphine), trazadone, and 300 mg of toporol, instead of the 100 mg i take now. evrytime i see a dr, they give me a new prescription or 2, bot don't look for any common link as to why i'm only 27, and have had and continue to have one health issue after another. and i make sure each dr has records of all of my test results, symptons, medications, etc.i went to the er last weekend, because i woke up with a swollen face, rash on my face, arms, neck, and chest, large fluid-filled welts on my behind, trouble breathing, and abdominal pain. my bp was 140/107 and my pulse was 160... when i got to the room, the dr spent less then 10 minutes with me, did no tests, no chest x-ray, no EKG, nothing... told me i was probably having a reaction to the pollen, and had indigestion, gave me a benadryl, said, "follow up with your family dr. on monday", and discharged me. since then, the "mysterious" reaction has cleared up, but i still have the abdominal pain. when i tried to explain to the er dr the last time i had the pain in my chest and trouble breathing i had pneumonia, even though i had no fever, she interruped me ad said, "i'm not going to argue with you, you don't have pneumonia, you don't have a fever and your chest sounds fine, it's just acid reflux", signed the discharge, and left the room. i'm so frustrated and fed up with all of this, i'd almost just rather say F the dr'[s and wait until something finally kills me and puts me out of my misery.
Have the doctors thought of Prednisone for you? I am no doctor, but wondering why Prednisone works so well for other autoimmune disorders but they haven't put you on it. Also, Plaquenel.
Have you seen an endocrinologist? I think that would be a great big step in the right direction.
Please let us all know what your doctors come up with. Sounds to me like you need new doctors to start from scratch! If your spouse is cranky because of lack of sex, tell him to find it elsewhere, but to remember your health comes first and his love for you should be where the compassion comes in. Sex isn't the most important thing in the world, but men sure seem to die without it.
What about your diet. What types of foods do you consume? Have you been tested for allergies and anemia? I doubt any of us would be able to come up with a helpful answer if your doctors can't, but maybe you could step into a medical teaching university and ask them to make you a guniea pig! They always love a guniea pig to learn on.
Have you seen an endocrinologist? I think that would be a great big step in the right direction.
Please let us all know what your doctors come up with. Sounds to me like you need new doctors to start from scratch! If your spouse is cranky because of lack of sex, tell him to find it elsewhere, but to remember your health comes first and his love for you should be where the compassion comes in. Sex isn't the most important thing in the world, but men sure seem to die without it.
What about your diet. What types of foods do you consume? Have you been tested for allergies and anemia? I doubt any of us would be able to come up with a helpful answer if your doctors can't, but maybe you could step into a medical teaching university and ask them to make you a guniea pig! They always love a guniea pig to learn on.
Please Please Please talk to your doctor about your sleep problems. Sleep deprivation is an awful thing for your body! You woke up 98 times in 6 hours? yikes - how you can even remember what to type let alone spell correctly!!!
My thyroid levels are finally where I feel good but I also have Narcolepsy.When I was doing some research early in my Narcolepsy treatment I found that thyroid and sleeping disorders are commonly linked together. I also found out that many of my sleepy friends have troubles with pcos.
Hang in there~
My thyroid levels are finally where I feel good but I also have Narcolepsy.When I was doing some research early in my Narcolepsy treatment I found that thyroid and sleeping disorders are commonly linked together. I also found out that many of my sleepy friends have troubles with pcos.
Hang in there~
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