Aa
Updated status
Back in March '13, I posted a lengthy description of my symptoms here:
http://www.medhelp.org/posts/Undiagnosed-Symptoms/Anyone-up-for-a-differential-LONG/show/1915483#post_8936256
My symptoms continue to gradually improve. I still can't do many of my normal tasks, and never feel "normal", but the symptoms are quite tolerable, these days. (...which I'm so thankful for.) :D
If anyone has any reasoned ideas as to what's going on, I'd live to hear it. (All tests have come back normal: HR, BP, temp., multiple blood tests, EKG, brain scan *circulation, heart monitors, echocardiogram, eye exams, breast ultrasound, stool analysis, and more.)
For my own mental health, I've given-up seeking help from medical doctors, for now at least. All have been, at best, unhelpful. Many have needlessly mocked or insulted me.
I have had zero real health issues prior to this. I didn't even have any of the typical childhood diseases. I do have PCOS, even though it has been completely irrelevant (with none of the common, physical symptoms). While I'm 47, I don't have any of the typical peri-menopause symptoms. (My oldest sister didn't go through menopause 'til age 60, and my 52 yo sister thinks she might be starting.) For now, I'm going with the premise my PCOS is causing unusual peri-menopause symptoms...even though this seems less and less likely as my symptoms improve and my menstrual cycles remain the same.
I also eat VERY healthy and exercise pretty much every, single day. I am a healthy BMI, although I'm still looking to drop 10-20lbs.
My symptoms tend to improve or almost disapoear, under stress. For example, any visually-demanding task will cause symptoms to appear and/or worsen. It happens quickest when driving (which is, I guess, the most visually-demanding thing I do), which is why I no longer drive. (But I also no longer go to the movies, see plays, etc. which also elicit/worsen symptoms.) Last week, I had little choice but to help my husband with the vehicle swap, when one of our cars went in for service. The thing is, the car I was driving was the broken one. A differential problem had it lurching and rumbling during every acceleration, or at speeds over 40km/h. I didn't know if it would even make it to the shop. Now, if you knew me, you'd know I'm about the least-nervous person. So, while someone else might be tense in that situation, I was laughing and smiling the whole time on this 5K drive to the dealership. ...HR and BP undoubtedly my usual, low numbers. For the first time while driving, I had no additional or worsening symptoms. I'm always relaxed while driving (I love driving), but this was the first time there was a stressor while driving. This was the first time I had no worsening of symptoms while driving. So...maybe...? ;)
On that note, back when my symptoms were really bad, I got some troubling news at a time when my symptoms were so bad I was in bed trying to sleep them off. As the severity and potential impact of the news slowly sank in (causing me significant concern), my symptoms almost disappeared. That's when it first became evident stress did not worsen my symptoms. If anything, stress seems to alleviate them. (Overall, I have a very happy, nearly stress-free life.)
Other suggestions that haven't panned out are IBS (few symptoms), GERD (have never had acid reflux), diabetes (never thirsty, urinate normally, normal fasting glucose levels), low magnesium (few symptoms)...
Today, I had a hearing anomaly for the first time. A solid tone sounded like short beeps in one direction, but unbroken when I turned my head slightly. (I'm not worried about this. It's just curious.)
No one seems to have any idea what's wrong with me. I'm hoping it's nothing serious and will self-correct (although it's been 14 months since it all began). I'd sure like to know if there's anything I can do to improve the situation, and what the likely prognosis is (another month?, year?, the rest of my life?).
If you have any logical ideas, I'm all ears. Thanks Undiagnosed Symptoms forum!! :D
http://www.medhelp.org/posts/Undiagnosed-Symptoms/Anyone-up-for-a-differential-LONG/show/1915483#post_8936256
My symptoms continue to gradually improve. I still can't do many of my normal tasks, and never feel "normal", but the symptoms are quite tolerable, these days. (...which I'm so thankful for.) :D
If anyone has any reasoned ideas as to what's going on, I'd live to hear it. (All tests have come back normal: HR, BP, temp., multiple blood tests, EKG, brain scan *circulation, heart monitors, echocardiogram, eye exams, breast ultrasound, stool analysis, and more.)
For my own mental health, I've given-up seeking help from medical doctors, for now at least. All have been, at best, unhelpful. Many have needlessly mocked or insulted me.
I have had zero real health issues prior to this. I didn't even have any of the typical childhood diseases. I do have PCOS, even though it has been completely irrelevant (with none of the common, physical symptoms). While I'm 47, I don't have any of the typical peri-menopause symptoms. (My oldest sister didn't go through menopause 'til age 60, and my 52 yo sister thinks she might be starting.) For now, I'm going with the premise my PCOS is causing unusual peri-menopause symptoms...even though this seems less and less likely as my symptoms improve and my menstrual cycles remain the same.
I also eat VERY healthy and exercise pretty much every, single day. I am a healthy BMI, although I'm still looking to drop 10-20lbs.
My symptoms tend to improve or almost disapoear, under stress. For example, any visually-demanding task will cause symptoms to appear and/or worsen. It happens quickest when driving (which is, I guess, the most visually-demanding thing I do), which is why I no longer drive. (But I also no longer go to the movies, see plays, etc. which also elicit/worsen symptoms.) Last week, I had little choice but to help my husband with the vehicle swap, when one of our cars went in for service. The thing is, the car I was driving was the broken one. A differential problem had it lurching and rumbling during every acceleration, or at speeds over 40km/h. I didn't know if it would even make it to the shop. Now, if you knew me, you'd know I'm about the least-nervous person. So, while someone else might be tense in that situation, I was laughing and smiling the whole time on this 5K drive to the dealership. ...HR and BP undoubtedly my usual, low numbers. For the first time while driving, I had no additional or worsening symptoms. I'm always relaxed while driving (I love driving), but this was the first time there was a stressor while driving. This was the first time I had no worsening of symptoms while driving. So...maybe...? ;)
On that note, back when my symptoms were really bad, I got some troubling news at a time when my symptoms were so bad I was in bed trying to sleep them off. As the severity and potential impact of the news slowly sank in (causing me significant concern), my symptoms almost disappeared. That's when it first became evident stress did not worsen my symptoms. If anything, stress seems to alleviate them. (Overall, I have a very happy, nearly stress-free life.)
Other suggestions that haven't panned out are IBS (few symptoms), GERD (have never had acid reflux), diabetes (never thirsty, urinate normally, normal fasting glucose levels), low magnesium (few symptoms)...
Today, I had a hearing anomaly for the first time. A solid tone sounded like short beeps in one direction, but unbroken when I turned my head slightly. (I'm not worried about this. It's just curious.)
No one seems to have any idea what's wrong with me. I'm hoping it's nothing serious and will self-correct (although it's been 14 months since it all began). I'd sure like to know if there's anything I can do to improve the situation, and what the likely prognosis is (another month?, year?, the rest of my life?).
If you have any logical ideas, I'm all ears. Thanks Undiagnosed Symptoms forum!! :D
I still say some of your symptoms do suggest a migraine variant or possible odd seizure (can't think of the name_ of it). But more like a migraine without the headache which is why I didn't get diagnosed for 8 years. They thought I was a drug addict because I mentioned pain kilers in the ER. I had terrible abdominal pain. I could go on for a long time about how badly I was treated but I just wanted to say hang in there and glad some of the symptoms are getting better. One of the latest treatments for migraine is magnesium and riboflavin. I am taking 500mg of slomag. I don't know the dose of riboflavin. But because of my severe vertigo I have tried antidepressants and they didn't work and now I'm on Topamax which makes your short memory really bad but it has cut the vertigo for the most part. I hate the meds too very much. But for me I was losing weight so much and getting sick and it was so painful I was at my wits end. So I took the pills and finally it worked. One doctor withheld pain meds and other meds until they got my chart in the ER and my potassium dropped so low they had to give me a bolus of potassium and the doctor actually apologized (which you don't hear very often). Anyway, keep an open mind. You have been hurt by the medical community too. I understand.
take care,
mkh9
take care,
mkh9
Thank you, so much, for your reply, mkh9.
I have not had an EEG, nor has one been suggested.
I have read a bit about the myriad kinds of migraine, but have no way of knowing if any of it applies to me. I don't personally know anyone with migraine. There are no illnesses that run in my family, either. I've read that some types of migraine are not painful. I can't say I've ever had a migraine, in the traditional sense. I do have almost daily headaches since this weirdness began, but they are mild. Just an annoyance, really. (I had my first headache in my 30s, and then maybe one per year or every two years, after that, 'til this started. So, the daily headaches have been an adjustment. I'm just grateful they are mild, and tolerable. I've had one or two bad headaches, and really feel for anyone who has to endure that regularly.)
BTW, I don't "take" anything, and it would be a hard sell to get me to start doing so. There would have to be clear diagnosis and explanation how a medication would improve the problem. I don't even have aspirin in my house.
I have never passed out, and do not experience strange smells or become unresponsive. While I do experience nausea, I haven't vomited. I had regular bouts of diarrhea at the beginning, which is now down to a couple of times per month. I never have lower abdominal pain or bloating. (I still occasionally have a weird pain in my upper abdomen/lower chest which feels as though someone has shoved a baseball under my xyphoid process. It used to be common but, thankfully, is pretty rare, now...maybe 4 times in 2013. It goes away as bafflingly as it comes.)
Whatever this is, it began suddenly, with episodes of near-fainting (the sensation I was about to black out, but never have) and a constellation of other intense symptoms. My excellent vision went blurry, just like that. (It's not "bad" now. I'm wearing eyeglasses with the lowest Rx. It's just an adjustment, after a lifetime of perfect vision, to suddenly, one day, not be able to see as clearly as I did the day before.)
I certainly have the means to do whatever tests I choose. But since drs have been dismissive, directing my diagnosis has been pretty much left to me. My last dr. visit was with that awful neurologist I mentioned, which really put me off the medical field...a kind of last straw...at least for now.
I remember when I first got sick, my husband mentioned to his business partners my difficulties in getting drs to "do" anything to find the cause. They were outraged for me and admonished my husband to immediately get me to a specialist. He responded, "I agree. But which kind of specialist? We don't have any idea what's wrong. Multiple systems are involved."
Sorry...side note... The one, brief moment of credibility I garnered was when my husband grew tired of a nurse accusing me of imagining my symptoms. He knows me, of course. He knows I'm tough as nails and have zero history of hypochondria. Exasperated by the nurse's attitude, he finally barked, "She's as tough as a horse!!! If she says something's wrong, something's wrong!" The nurse reluctantly agreed to send me for a 2-minute EKG...which was normal.
A friend of a friend recently died from the illness she couldn't convince drs she had. As my symptoms continue to improve, I'm hopeful this is not serious. I try to stay healthy, in the mean time. I exercise daily, and eat a diet said to prevent illness (even possibly cure many illnesses). It's not the Dr. Fuhrman diet, but my diet is very Fuhrman-esque (almost entirely whole foods, mostly organic, very few processed foods, and virtually zero junk food). I feel that's the best I can do. I eat well. I exercise. I do yoga. I have a super-happy marriage and pretty awesome life, overall. I just try to make the best of it. It's the symptoms that are getting in the way.
Anyway, thanks so much for taking the time to read, and offer suggestions. If I get back on the medical testing bandwagon, I'll ask about migraine. In the mean time, please don't hesitate to make more suggestions. Thanks! :D
I have not had an EEG, nor has one been suggested.
I have read a bit about the myriad kinds of migraine, but have no way of knowing if any of it applies to me. I don't personally know anyone with migraine. There are no illnesses that run in my family, either. I've read that some types of migraine are not painful. I can't say I've ever had a migraine, in the traditional sense. I do have almost daily headaches since this weirdness began, but they are mild. Just an annoyance, really. (I had my first headache in my 30s, and then maybe one per year or every two years, after that, 'til this started. So, the daily headaches have been an adjustment. I'm just grateful they are mild, and tolerable. I've had one or two bad headaches, and really feel for anyone who has to endure that regularly.)
BTW, I don't "take" anything, and it would be a hard sell to get me to start doing so. There would have to be clear diagnosis and explanation how a medication would improve the problem. I don't even have aspirin in my house.
I have never passed out, and do not experience strange smells or become unresponsive. While I do experience nausea, I haven't vomited. I had regular bouts of diarrhea at the beginning, which is now down to a couple of times per month. I never have lower abdominal pain or bloating. (I still occasionally have a weird pain in my upper abdomen/lower chest which feels as though someone has shoved a baseball under my xyphoid process. It used to be common but, thankfully, is pretty rare, now...maybe 4 times in 2013. It goes away as bafflingly as it comes.)
Whatever this is, it began suddenly, with episodes of near-fainting (the sensation I was about to black out, but never have) and a constellation of other intense symptoms. My excellent vision went blurry, just like that. (It's not "bad" now. I'm wearing eyeglasses with the lowest Rx. It's just an adjustment, after a lifetime of perfect vision, to suddenly, one day, not be able to see as clearly as I did the day before.)
I certainly have the means to do whatever tests I choose. But since drs have been dismissive, directing my diagnosis has been pretty much left to me. My last dr. visit was with that awful neurologist I mentioned, which really put me off the medical field...a kind of last straw...at least for now.
I remember when I first got sick, my husband mentioned to his business partners my difficulties in getting drs to "do" anything to find the cause. They were outraged for me and admonished my husband to immediately get me to a specialist. He responded, "I agree. But which kind of specialist? We don't have any idea what's wrong. Multiple systems are involved."
Sorry...side note... The one, brief moment of credibility I garnered was when my husband grew tired of a nurse accusing me of imagining my symptoms. He knows me, of course. He knows I'm tough as nails and have zero history of hypochondria. Exasperated by the nurse's attitude, he finally barked, "She's as tough as a horse!!! If she says something's wrong, something's wrong!" The nurse reluctantly agreed to send me for a 2-minute EKG...which was normal.
A friend of a friend recently died from the illness she couldn't convince drs she had. As my symptoms continue to improve, I'm hopeful this is not serious. I try to stay healthy, in the mean time. I exercise daily, and eat a diet said to prevent illness (even possibly cure many illnesses). It's not the Dr. Fuhrman diet, but my diet is very Fuhrman-esque (almost entirely whole foods, mostly organic, very few processed foods, and virtually zero junk food). I feel that's the best I can do. I eat well. I exercise. I do yoga. I have a super-happy marriage and pretty awesome life, overall. I just try to make the best of it. It's the symptoms that are getting in the way.
Anyway, thanks so much for taking the time to read, and offer suggestions. If I get back on the medical testing bandwagon, I'll ask about migraine. In the mean time, please don't hesitate to make more suggestions. Thanks! :D
Thanks for the reply, silverfox67.
I've detailed everything, so it just seems like I've tried everything. I really haven't had much done that isn't pretty generic...maybe the brain circulation scan and echocardiogram would count?
Mostly drs have been dismissive, leaving me to obtusely direct my own diagnosis. I got a new family dr. at the end of 2012 (my previous GP retired in 2005), and this new dr was amenable to doing whatever tests I requested. Himself, he just did a complete physical and blood work, as he does for all new patients. Additionally, he sent me for a breast ultrasound to rule out breast cancer, and that's about it. I pressed for some neurological testing. It was an ER dr. who arranged the cardiology appt., and my husband's dr. who requested a stool analysis. I went to an optometrist on my own. None will even consider checking to see if I'm peri-menopausal. I'm not gung ho to have a full CAT scan or MRI, but no dr. has suggested it, either. The neurologist my new dr. sent me to was completely incompetent (online ranking of 1/5, with most calling him incompetent or a quack), which left me mistrustful of my new GP, now, as well (for sending to someone he should've known is incompetent).
I've sometimes put their lack of appropriate consideration down to the fact that I don't exaggerate symptom severity, am very calm and reasoned when describing the situation, and am otherwise extremely healthy. I just don't get it, though. I've found all interactions with drs and nurses, so far, to be irrelevant, at best, and detrimental, at worst. On their own, my symptoms have improved. But, life is not much different for me today than when this suddenly began one day back in Aug. 2012.
Funny enough, I've been thinking about trying probiotics under the theory it probably won't hurt. (Visual tasks elicit more troubling symptoms, so I don't really know how that would relate to diet or digestion).
As for what drs say about me... Some are polite and just shrug their shoulders. Most don't say they don't know, but rather automatically decide I'm imagining everything (which is really frustrating). The more polite ones do say they don't know, and...you know...now please leave. There's never been an offer to get to the bottom of it; to do more testing; to really think about what is going on. I mean, I learned not to mention that driving is the quickest way to elicit symptoms because every last one of these men jumps on the "you're stressed about driving" bandwagon. Nevermind that I love driving, that I'm relaxed when I'm driving (even when symptoms begin) or that viewing a seminar or watching a play also elicits the same symptoms. (No one has suggested I'm overly stressed about seeing a play. LOL!)
Anyway, thanks for reading. If you come across anyone who has similar symptoms and has found what appears to be the cause, please feel free to post that info. here. Thanks! :D Oh, and I really am thinking about trying probiotics...
I've detailed everything, so it just seems like I've tried everything. I really haven't had much done that isn't pretty generic...maybe the brain circulation scan and echocardiogram would count?
Mostly drs have been dismissive, leaving me to obtusely direct my own diagnosis. I got a new family dr. at the end of 2012 (my previous GP retired in 2005), and this new dr was amenable to doing whatever tests I requested. Himself, he just did a complete physical and blood work, as he does for all new patients. Additionally, he sent me for a breast ultrasound to rule out breast cancer, and that's about it. I pressed for some neurological testing. It was an ER dr. who arranged the cardiology appt., and my husband's dr. who requested a stool analysis. I went to an optometrist on my own. None will even consider checking to see if I'm peri-menopausal. I'm not gung ho to have a full CAT scan or MRI, but no dr. has suggested it, either. The neurologist my new dr. sent me to was completely incompetent (online ranking of 1/5, with most calling him incompetent or a quack), which left me mistrustful of my new GP, now, as well (for sending to someone he should've known is incompetent).
I've sometimes put their lack of appropriate consideration down to the fact that I don't exaggerate symptom severity, am very calm and reasoned when describing the situation, and am otherwise extremely healthy. I just don't get it, though. I've found all interactions with drs and nurses, so far, to be irrelevant, at best, and detrimental, at worst. On their own, my symptoms have improved. But, life is not much different for me today than when this suddenly began one day back in Aug. 2012.
Funny enough, I've been thinking about trying probiotics under the theory it probably won't hurt. (Visual tasks elicit more troubling symptoms, so I don't really know how that would relate to diet or digestion).
As for what drs say about me... Some are polite and just shrug their shoulders. Most don't say they don't know, but rather automatically decide I'm imagining everything (which is really frustrating). The more polite ones do say they don't know, and...you know...now please leave. There's never been an offer to get to the bottom of it; to do more testing; to really think about what is going on. I mean, I learned not to mention that driving is the quickest way to elicit symptoms because every last one of these men jumps on the "you're stressed about driving" bandwagon. Nevermind that I love driving, that I'm relaxed when I'm driving (even when symptoms begin) or that viewing a seminar or watching a play also elicits the same symptoms. (No one has suggested I'm overly stressed about seeing a play. LOL!)
Anyway, thanks for reading. If you come across anyone who has similar symptoms and has found what appears to be the cause, please feel free to post that info. here. Thanks! :D Oh, and I really am thinking about trying probiotics...
Hi JodyDFB,
I'm going to take a stab at this. Have you had an electro-encephalogram or EEG? You have some symptoms of seizure or migraine variant. I have a migraine variant that took me 8 years to get diagnosed and I would have the shakes, or shivers, then throw up, or have diarrhea or have to go right away, and then throw up all night but no head ache or no aura. Then I finally got diagnosed by a neurologist/psychiatrist who took the time to listen and did an EEG which was positive for a migraine/seizure pattern (they couldn't differentiate back then). I was put on 1.5mg klonopin because mine happened at night. That was in my 20'. Then in my 30's I started getting headaches and later auras. I then took sumatriptans. Only recently since I am peri-menopausal I started getting double vision, and vertigo and some darting lights. This is independent of the other symptoms that are under control and almost non-existant. I saw an eye doctor and ENT they said no ear problems no other dizziness coming from the ear it was my migraine. So I went back to my recent neurologist and she did anther EEG and it said migraine only no seizure. So I am just wondering if you have either one. Have they tested you for either? Do you ever get a weird smell or pass out? Or just don't respond? either way you may want to check for this with a migraine specialist.
I'm going to take a stab at this. Have you had an electro-encephalogram or EEG? You have some symptoms of seizure or migraine variant. I have a migraine variant that took me 8 years to get diagnosed and I would have the shakes, or shivers, then throw up, or have diarrhea or have to go right away, and then throw up all night but no head ache or no aura. Then I finally got diagnosed by a neurologist/psychiatrist who took the time to listen and did an EEG which was positive for a migraine/seizure pattern (they couldn't differentiate back then). I was put on 1.5mg klonopin because mine happened at night. That was in my 20'. Then in my 30's I started getting headaches and later auras. I then took sumatriptans. Only recently since I am peri-menopausal I started getting double vision, and vertigo and some darting lights. This is independent of the other symptoms that are under control and almost non-existant. I saw an eye doctor and ENT they said no ear problems no other dizziness coming from the ear it was my migraine. So I went back to my recent neurologist and she did anther EEG and it said migraine only no seizure. So I am just wondering if you have either one. Have they tested you for either? Do you ever get a weird smell or pass out? Or just don't respond? either way you may want to check for this with a migraine specialist.
I see you have just about exhausted every avenue - very commendable. Are you also taking Probiotics and enzymes? I find they help my stomach quite a bit as I have problems with GERD and Reflux. Sometimes I take Hydrochloric acid with my meals and that usually helps - once in a while it doesn't.
I too am trying a gluten free diet. Doesn't seem to make too much difference - but some "gluten-free" snacks seem to hurt my stomach.
I would be interested to find out what you try and what doctors say about you. Please continue to take care of yourself.
Wishing you the best
I too am trying a gluten free diet. Doesn't seem to make too much difference - but some "gluten-free" snacks seem to hurt my stomach.
I would be interested to find out what you try and what doctors say about you. Please continue to take care of yourself.
Wishing you the best
Oh, just wanted to add that I can't say, for sure, if food has any effect on my symptoms.
Back when it began, all "episodes" occurred within a half hour of a meal. ...but certainly not after every meal. Normal blood tests seemed to alleviate concerns about blood sugar.
Sometimes eating makes me feel better. Sometimes worse. I can't find any correlation between the types of food and symptoms. (The same food can be innocuous one day, and another day I'll feel terrible, afterwards.)
Contemplating the suggestion I might have IBS, I ate an IBS diet for a little while, with no improvement.
I have no known food allergies. I have no problem with gluten.
I can only say symptoms occur daily, and will likely come and go, regardless of what I do or don't eat.
Back when it began, all "episodes" occurred within a half hour of a meal. ...but certainly not after every meal. Normal blood tests seemed to alleviate concerns about blood sugar.
Sometimes eating makes me feel better. Sometimes worse. I can't find any correlation between the types of food and symptoms. (The same food can be innocuous one day, and another day I'll feel terrible, afterwards.)
Contemplating the suggestion I might have IBS, I ate an IBS diet for a little while, with no improvement.
I have no known food allergies. I have no problem with gluten.
I can only say symptoms occur daily, and will likely come and go, regardless of what I do or don't eat.
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