Aa
Need Test Ideas and A Diagnosis
32 y/o female. Symptoms since about age 14: daily nausea, weakness, dizziness; almost daily random (inexplicable) fevers, random (inexplicable) sharp pains throughout my body (bones, joints, veins), random feelings of heart palpitations or like my heart skips a beat and then thuds back into rhythm; a few random rashes (which may not even be related). No heartburn (no chest pain) but sometimes I do feel/taste that "sourness" is bubbling up from my stomach (I think I may have a weak esophageal sphincter).
In addition to the above, I have heavy brain fog that has caused me to forget things a lot, like meeting people, whole conversations, movies I've watched, what day, month, or year it is, and the like - enough that my husband has commented about it and said I need help; once while I was riding in a car with a friend driving, I was talking and mid-sentence I all of a sudden forgot what I was talking about, where I was going, who I was with, why I was in a car, how I got there, etc., and it was terrifying for about 20 seconds until my brain kicked in again. I'm very prone to forgetting what I'm talking about. So I also wonder if it may have something to do with my thalamus because I had a lot of closed brain injuries as a child (about a dozen from age 2-12) and my research on thalamic disorders aligns with all my symptoms.
I've been tested for MS (2002?), lupus (2003?), rheumatoid arthritis (2002?), Lyme disease (2003? only one test I think), leukaemia (2005), thyroid (repeatedly), cholesterol (a few times), h. pylori (multiple times from about 2010-2015), and had a CAT scan once (2000?) - all with no indications; at one point in my teens (2002?) I tested "borderline positive for a connective tissue disorder but it wasn't enough to make a diagnosis." I've had a quick ECG (no indications) and a day-long ECG; the latter I never saw the results of but was told by my doctor at the time (Dr. Pug.) that I had "a slight arrhythmia but they couldn't do anything about it." [then I asked to be referred to a heart specialist and he said no, so I asked for a copy of my medical file and he refused and then barred my husband and I as patients! I don't think he ever forwarded my medical information to my next doctor, Dr. F., either]
Food sometimes seemed/seems to aggravate or spark my symptoms and sometimes not. It particularly seemed/seems to with greasy or acidic foods (poutine, tomato sauce, citrus juice, etc.). And yet sometimes I'm fine with those foods. Other times plain Cheerios and almond milk or skim cow's milk will make me feel nauseous, so it may not be acid-related?
Gravol Ginger sometimes helps and sometimes isn't enough; regular gravol helps sometimes and other times doesn't.
In 2009 I was desperate to find any medication that would alleviate my symptoms, and of course had no family doctor at the time, so I went to emerg and asked if there was anything they could prescribe, because my symptoms were interfering with my work and life, and I was calling in sick a lot. Dr. B. gave me three options to try: gravol (useless), some kind of vertigo patch that goes behind your ear (just made my ears feel funny, like they were 'more open' - they 'clicked' a lot and just seemed not right, and the nausea and dizziness were still there), and omeprazole. I didn't think I needed acid reflux medication since I've never had heartburn except once or twice, but I was desperate, so I tried the omeprazole and it was my 'miracle drug.' It took about a month for it to show full effects but the symptoms were almost totally gone. It slowly waned in efficacy and, having found Dr. F. as a family doctor, she upped the dosage from 20mg to 40mg (2013?); we switched the med to Tecta 40mg late last year (2015) because the omep. longer seemed to be working as well.
I am now having more symptomatic days and spoke with Dr. F. about it, which caused us to discuss all my symptoms that led to me being on omeprazole and Tecta. She says that omeprazole and Tecta are "contraindicated for those symptoms", and referred me to an internal medicine specialist (waiting for an appointment), I am very anxious and frustrated at having to go through all this again, and fearful at possibly not finding a solution or having to feel so crappy again, and worried for how long I'll feel crappy, but I also recognize that maybe there is a better medication or permanent solution for me and would like to find it - I just don't want to feel so ill all the time like I did from age 14-25.
There were periods where I was symptom free but they were short; most of the time I held down a job by stubbornly refusing to acknowledge how sick I felt and just going to work anyway but over time it would eventually wear me down and I'd just end up calling in sick more often or quitting.
Since I'm having a recurrence of symptoms, I wonder if the Tecta just doesn't work as well for me as the omeprazole, or perhaps I should be taking it only when I feel gross?
At one point I tracked my symptoms and their frequency, duration, and unsymptomatic days and found that I would have symptoms for 3-7 days over a period of 7-10 days, almost like a cycle. [I'm on birth control and have been on birth control from age 14/15, various brands, except for some of 2005-2006. I feel I have to be on birth control because 1) I have horribly painful periods otherwise, and 2) my cycle gets crazy otherwise (at one point it was 10 very painful days long with just two weeks in between; prior to b/c it was crazy painful for a day or two but almost normal time-wise (5-6 days in about 28 days)). On Alesse I had painful periods, tri-cyclen lo the pain is almost gone. Menstrual cycle started at age 11. Went to hospital for painful periods at age 11/12 and was told I "probably have ovarian cysts that may have ruptured but there's nothing they can do." Not sure if any of that helps but it seems like it might be connected.]
Please help! Anything you can think of may be the key. But please don't say aspartame, I hardly ever eat/drink it and I look for it on all labels already.
Oh, also if it helps to know, I am 5'6" and overweight (obese by standards) but the symptoms have persisted at 120 lbs, 170 lbs, 200 lbs... Walking 5-10km a day, or walk-jogging 2-5km 3-5 times a week, or being inactive... Avoiding acids and eating/drinking acids... Stress and no stress... With and without anxiety (been on Effexor since 2011-ish).
In addition to the above, I have heavy brain fog that has caused me to forget things a lot, like meeting people, whole conversations, movies I've watched, what day, month, or year it is, and the like - enough that my husband has commented about it and said I need help; once while I was riding in a car with a friend driving, I was talking and mid-sentence I all of a sudden forgot what I was talking about, where I was going, who I was with, why I was in a car, how I got there, etc., and it was terrifying for about 20 seconds until my brain kicked in again. I'm very prone to forgetting what I'm talking about. So I also wonder if it may have something to do with my thalamus because I had a lot of closed brain injuries as a child (about a dozen from age 2-12) and my research on thalamic disorders aligns with all my symptoms.
I've been tested for MS (2002?), lupus (2003?), rheumatoid arthritis (2002?), Lyme disease (2003? only one test I think), leukaemia (2005), thyroid (repeatedly), cholesterol (a few times), h. pylori (multiple times from about 2010-2015), and had a CAT scan once (2000?) - all with no indications; at one point in my teens (2002?) I tested "borderline positive for a connective tissue disorder but it wasn't enough to make a diagnosis." I've had a quick ECG (no indications) and a day-long ECG; the latter I never saw the results of but was told by my doctor at the time (Dr. Pug.) that I had "a slight arrhythmia but they couldn't do anything about it." [then I asked to be referred to a heart specialist and he said no, so I asked for a copy of my medical file and he refused and then barred my husband and I as patients! I don't think he ever forwarded my medical information to my next doctor, Dr. F., either]
Food sometimes seemed/seems to aggravate or spark my symptoms and sometimes not. It particularly seemed/seems to with greasy or acidic foods (poutine, tomato sauce, citrus juice, etc.). And yet sometimes I'm fine with those foods. Other times plain Cheerios and almond milk or skim cow's milk will make me feel nauseous, so it may not be acid-related?
Gravol Ginger sometimes helps and sometimes isn't enough; regular gravol helps sometimes and other times doesn't.
In 2009 I was desperate to find any medication that would alleviate my symptoms, and of course had no family doctor at the time, so I went to emerg and asked if there was anything they could prescribe, because my symptoms were interfering with my work and life, and I was calling in sick a lot. Dr. B. gave me three options to try: gravol (useless), some kind of vertigo patch that goes behind your ear (just made my ears feel funny, like they were 'more open' - they 'clicked' a lot and just seemed not right, and the nausea and dizziness were still there), and omeprazole. I didn't think I needed acid reflux medication since I've never had heartburn except once or twice, but I was desperate, so I tried the omeprazole and it was my 'miracle drug.' It took about a month for it to show full effects but the symptoms were almost totally gone. It slowly waned in efficacy and, having found Dr. F. as a family doctor, she upped the dosage from 20mg to 40mg (2013?); we switched the med to Tecta 40mg late last year (2015) because the omep. longer seemed to be working as well.
I am now having more symptomatic days and spoke with Dr. F. about it, which caused us to discuss all my symptoms that led to me being on omeprazole and Tecta. She says that omeprazole and Tecta are "contraindicated for those symptoms", and referred me to an internal medicine specialist (waiting for an appointment), I am very anxious and frustrated at having to go through all this again, and fearful at possibly not finding a solution or having to feel so crappy again, and worried for how long I'll feel crappy, but I also recognize that maybe there is a better medication or permanent solution for me and would like to find it - I just don't want to feel so ill all the time like I did from age 14-25.
There were periods where I was symptom free but they were short; most of the time I held down a job by stubbornly refusing to acknowledge how sick I felt and just going to work anyway but over time it would eventually wear me down and I'd just end up calling in sick more often or quitting.
Since I'm having a recurrence of symptoms, I wonder if the Tecta just doesn't work as well for me as the omeprazole, or perhaps I should be taking it only when I feel gross?
At one point I tracked my symptoms and their frequency, duration, and unsymptomatic days and found that I would have symptoms for 3-7 days over a period of 7-10 days, almost like a cycle. [I'm on birth control and have been on birth control from age 14/15, various brands, except for some of 2005-2006. I feel I have to be on birth control because 1) I have horribly painful periods otherwise, and 2) my cycle gets crazy otherwise (at one point it was 10 very painful days long with just two weeks in between; prior to b/c it was crazy painful for a day or two but almost normal time-wise (5-6 days in about 28 days)). On Alesse I had painful periods, tri-cyclen lo the pain is almost gone. Menstrual cycle started at age 11. Went to hospital for painful periods at age 11/12 and was told I "probably have ovarian cysts that may have ruptured but there's nothing they can do." Not sure if any of that helps but it seems like it might be connected.]
Please help! Anything you can think of may be the key. But please don't say aspartame, I hardly ever eat/drink it and I look for it on all labels already.
Oh, also if it helps to know, I am 5'6" and overweight (obese by standards) but the symptoms have persisted at 120 lbs, 170 lbs, 200 lbs... Walking 5-10km a day, or walk-jogging 2-5km 3-5 times a week, or being inactive... Avoiding acids and eating/drinking acids... Stress and no stress... With and without anxiety (been on Effexor since 2011-ish).
I also have intermittent insomnia (delayed sleep cycle, trouble staying asleep, and waking earlier than usual; all self-diagnosed), and my bloodwork and vitamin levels are fine (and alway have been when tested over the years).
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