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My Story!
Feb 21, 2009 07:09PM
- 2 comments
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I've had Fibromyalgia for years...can even trace some of it's symptoms back to my teenage years...mostly the leg pain. I had the 'aching' symptoms then, which grew worse over time. In the spring of 2007, I had an attack of MS-type symptoms which literally "rocked my world!" They lingered for about 6 months, then calmed down after a dose of steroids prescribed by my Pain Specialists (for the Fibro). He referred me on to my 3rd neuro...as my first neuro (referred by a PCP), referred me on the OU Neurology Dpt.
My first set of MRI's was done on an "open unit" (which I'm fixing to start a new topic on), which is simply a "big magnetic ring" that you pass through for exam. A "closed unit" is the kind of machine that is totally enclosed...like a big tube. These have a much stronger magnetic fleild and yield better images; whereas, the "open units" can supposedly "miss" alot of neurological findings, as it's just not powerful enough to record them. As I said, my MRI's were done on an "open unit" machine. They were negative/clear, with only a "suspcicious spot" on my C-spine. So, all 3 neuro's ruled out MS. My first neuro, had also given me an EEG, EMG, & Visual Field Test. All were fine. So, they had no "positive" tests to go off of.
I’ve had 2 positive ANA tests done. The first one was 1:160 and the second one was 1:640…both were speckled pattern. I’ve been suspected of Lupus too, but was told I didn’t have it by a previous Rheumatologist. However, my last neuro, ENT, & Pain Specialists ALL thought it was Lupus, so, I had a new referral to a new Rheumatologists; however, we had to suddenly move to Montana. I see a new one here next Thursday. I’ll be sure and post back her conclusion or actions.
I tested positive for a previous Epstein Barr Virus infection. I’ve read several articles mentioning a correlation to EBV & MS. I’ve tested negative for Lyme disease, Sjogren’s, thyroid disease, & several others that I can not even remember.
I've continued to have MS-type symptoms over the past 2 years, with 4 specific episodes where I had an onslaught of symptoms (flare-up or exacerbation?) ...and am in that 4th one now. My new symptoms are...blurriness dead in the center of my left-eye vision, with strange sensation of left eyeball being 'swollen' (but is not) and feels like my left eye is drooping, but it's not. I just saw a new optometrist a week ago, who thought I was getting glaucoma....or at least, showed signs of it. He said he did NOT see any evidence of 'optic neuritis.' He said that my eye pressure was high (20 in left & 22 in rt), I had massive tissue build-up on the backs of my eye, & that I had 'notching' on the head rim of my right-eye optic nerve. All I can say is that it's my left eye that has the 'blurry center of vision."
I'm also having numbness sensations in my chin (off-&-on) with tingling in my frontal face, nose, and teeth). I continue to have the "burning sensations" in my face, which I've been having for 2 years now. Here is a list of my typical symptoms over the past 2 years, although several, I've had for numerous 20+ years.
* FATIGUE & PAIN!!!
* numbness in various places...esp. the face, hands/arms & legs/feet
* tingling or pins-&-needles in various places...esp. the face, hands/arms &
legs/feet
* odd buzzing & vibrating sensations in various places
* burning sensations in various places
* off-balance issues: where it either feels like i'm moving (and I'm not)...or like I'm
constantly "falling to the right"; constantly 'tripping over nothing' & knocking
things over or dropping them, bumping into walls, running into people, etc..
* severe cognitive issues including, but not limited to, memory, word-recall,
loosing "complete thoughts" as in, my whole brain just "shuts down" (like a
computer 'freeze' or 'crash'); attention to detail; concentration when I'm
reading (keep having to read the same line over & over until it 'sinks in');
fearful episodes where I'm either doing something & I 'all of a sudden' forget
how to do it (sequence) or I'm driving somewhere & 'all of a sudden' I forget
where it is I'm driving too...or why I'm in a turn lane?;
* speech/language problems: sometimes it's as though my words come out all
'jumbled' (letters are backwards or just out of order) & others where my words
come out backwards; times when I'm speaking and my thoughts just vanish
(computer crash), or I'm trying to listen to someone and my mind goes
blank...can't hear the rest of the sentence/conversation (ADD...Attention
Deficit Disorder); difficulty with recalling words, how to spell them, or type
them and others as though my articulators (mouth, tongue, jaw) don't want to
cooperate
* aicd reflux problems and gastrointestinal problems that come-&-go
* bladder problems that come & go...incontinence, urgency, inability to void (all
come-&-go at various times); recurrent bladder infections
* swallowing problems
* sudden jolts of 'electric-like' shocks that feels like a hit from a tazer gun, in
various places of my body, but most prominent in my legs and arms
* over-all aching with feeling of having the flu
* sensations of someone 'sticking me with a pin' or a 'bug biting me' in various
places
* odd sensations of 'bugs crawling on me' or 'my hair standing up'
* eye problems: off-&-on eye blurriness...with my glasses on, eye pain, see
floaters and strange movements in my peripheral vision (eyes playing tricks
on me)
* anxiety attacks
* sudden feelings of extreme emotion
* TMJ/a lot of sharp ear pain, sometimes have 'ringing' in my ears, or hear things
that 'strange sounds' that aren't there (i.e. someone talking, phone ringing)
* head and right hand tremors; although, sometimes I get the 'whole-body'
shakes
* severe spasticity, especially in legs and feet, hands, & neck/shoulders; charlie-
horse-type spasms in legs, feet, neck, and sometimes arms
* severe migraines
* muscle weaknesses esecially in ankles, legs, hands, wrists, arms
* poor immune system
* edems/swelling of hands and feet, particularly around the joints (ankles, toe and
finger joints)
* severe allergies, recurrent sinus infections
My first set of MRI's was done on an "open unit" (which I'm fixing to start a new topic on), which is simply a "big magnetic ring" that you pass through for exam. A "closed unit" is the kind of machine that is totally enclosed...like a big tube. These have a much stronger magnetic fleild and yield better images; whereas, the "open units" can supposedly "miss" alot of neurological findings, as it's just not powerful enough to record them. As I said, my MRI's were done on an "open unit" machine. They were negative/clear, with only a "suspcicious spot" on my C-spine. So, all 3 neuro's ruled out MS. My first neuro, had also given me an EEG, EMG, & Visual Field Test. All were fine. So, they had no "positive" tests to go off of.
I’ve had 2 positive ANA tests done. The first one was 1:160 and the second one was 1:640…both were speckled pattern. I’ve been suspected of Lupus too, but was told I didn’t have it by a previous Rheumatologist. However, my last neuro, ENT, & Pain Specialists ALL thought it was Lupus, so, I had a new referral to a new Rheumatologists; however, we had to suddenly move to Montana. I see a new one here next Thursday. I’ll be sure and post back her conclusion or actions.
I tested positive for a previous Epstein Barr Virus infection. I’ve read several articles mentioning a correlation to EBV & MS. I’ve tested negative for Lyme disease, Sjogren’s, thyroid disease, & several others that I can not even remember.
I've continued to have MS-type symptoms over the past 2 years, with 4 specific episodes where I had an onslaught of symptoms (flare-up or exacerbation?) ...and am in that 4th one now. My new symptoms are...blurriness dead in the center of my left-eye vision, with strange sensation of left eyeball being 'swollen' (but is not) and feels like my left eye is drooping, but it's not. I just saw a new optometrist a week ago, who thought I was getting glaucoma....or at least, showed signs of it. He said he did NOT see any evidence of 'optic neuritis.' He said that my eye pressure was high (20 in left & 22 in rt), I had massive tissue build-up on the backs of my eye, & that I had 'notching' on the head rim of my right-eye optic nerve. All I can say is that it's my left eye that has the 'blurry center of vision."
I'm also having numbness sensations in my chin (off-&-on) with tingling in my frontal face, nose, and teeth). I continue to have the "burning sensations" in my face, which I've been having for 2 years now. Here is a list of my typical symptoms over the past 2 years, although several, I've had for numerous 20+ years.
* FATIGUE & PAIN!!!
* numbness in various places...esp. the face, hands/arms & legs/feet
* tingling or pins-&-needles in various places...esp. the face, hands/arms &
legs/feet
* odd buzzing & vibrating sensations in various places
* burning sensations in various places
* off-balance issues: where it either feels like i'm moving (and I'm not)...or like I'm
constantly "falling to the right"; constantly 'tripping over nothing' & knocking
things over or dropping them, bumping into walls, running into people, etc..
* severe cognitive issues including, but not limited to, memory, word-recall,
loosing "complete thoughts" as in, my whole brain just "shuts down" (like a
computer 'freeze' or 'crash'); attention to detail; concentration when I'm
reading (keep having to read the same line over & over until it 'sinks in');
fearful episodes where I'm either doing something & I 'all of a sudden' forget
how to do it (sequence) or I'm driving somewhere & 'all of a sudden' I forget
where it is I'm driving too...or why I'm in a turn lane?;
* speech/language problems: sometimes it's as though my words come out all
'jumbled' (letters are backwards or just out of order) & others where my words
come out backwards; times when I'm speaking and my thoughts just vanish
(computer crash), or I'm trying to listen to someone and my mind goes
blank...can't hear the rest of the sentence/conversation (ADD...Attention
Deficit Disorder); difficulty with recalling words, how to spell them, or type
them and others as though my articulators (mouth, tongue, jaw) don't want to
cooperate
* aicd reflux problems and gastrointestinal problems that come-&-go
* bladder problems that come & go...incontinence, urgency, inability to void (all
come-&-go at various times); recurrent bladder infections
* swallowing problems
* sudden jolts of 'electric-like' shocks that feels like a hit from a tazer gun, in
various places of my body, but most prominent in my legs and arms
* over-all aching with feeling of having the flu
* sensations of someone 'sticking me with a pin' or a 'bug biting me' in various
places
* odd sensations of 'bugs crawling on me' or 'my hair standing up'
* eye problems: off-&-on eye blurriness...with my glasses on, eye pain, see
floaters and strange movements in my peripheral vision (eyes playing tricks
on me)
* anxiety attacks
* sudden feelings of extreme emotion
* TMJ/a lot of sharp ear pain, sometimes have 'ringing' in my ears, or hear things
that 'strange sounds' that aren't there (i.e. someone talking, phone ringing)
* head and right hand tremors; although, sometimes I get the 'whole-body'
shakes
* severe spasticity, especially in legs and feet, hands, & neck/shoulders; charlie-
horse-type spasms in legs, feet, neck, and sometimes arms
* severe migraines
* muscle weaknesses esecially in ankles, legs, hands, wrists, arms
* poor immune system
* edems/swelling of hands and feet, particularly around the joints (ankles, toe and
finger joints)
* severe allergies, recurrent sinus infections
I have a lot of the symptoms that you do- but probably not to the same level of severity. And I know that I have both Fibromyalgia and CFS (Chronic Fatigue Syndrome). The first doctor who actually had the courage to diagnose me with CFS said that CFS can present with such a wide variety of symptoms in so many different combinations that it can often mimic the symptoms of other more serious sicknesses.
In my case it was heart disease- but as my doctor pointed out, the symptoms I was having were of the type a person would have if they had been developing Congestive Heart Failure over a period of several years, and most of my symptoms only presented in men with heart disease. A woman with heart disease would show slightly different, less severe symptoms.
So, I was sweating, feeling nauseous, dizzy... having pains in my chest and in my left arm... as if every night I was about to have a heart attack.
But it was just the way the CFS symptoms happened to combine, in my case. In my own research that I conducted on line I've seen cases of CFS that have mimiced the symptoms of heart disease, COPD, diabetes, and AIDS.
Don't get me wrong- I'm not saying that what you're going through is 100% CFS... your symptoms do sound severe and worthy of checking into and digging until you find out exactly what is wrong with you. I'd find a really good neurologist and really try to get to the bottom of what is wrong. But, since you've already been diagnosed with Fibro, CFS could be a logical conclusion for most of your symptoms.
Let me ask... do you have any swelling of the lymph nodes in your neck, or under your arms ?
In my case it was heart disease- but as my doctor pointed out, the symptoms I was having were of the type a person would have if they had been developing Congestive Heart Failure over a period of several years, and most of my symptoms only presented in men with heart disease. A woman with heart disease would show slightly different, less severe symptoms.
So, I was sweating, feeling nauseous, dizzy... having pains in my chest and in my left arm... as if every night I was about to have a heart attack.
But it was just the way the CFS symptoms happened to combine, in my case. In my own research that I conducted on line I've seen cases of CFS that have mimiced the symptoms of heart disease, COPD, diabetes, and AIDS.
Don't get me wrong- I'm not saying that what you're going through is 100% CFS... your symptoms do sound severe and worthy of checking into and digging until you find out exactly what is wrong with you. I'd find a really good neurologist and really try to get to the bottom of what is wrong. But, since you've already been diagnosed with Fibro, CFS could be a logical conclusion for most of your symptoms.
Let me ask... do you have any swelling of the lymph nodes in your neck, or under your arms ?
Hi i agree
i feel your sx are fibro and cfs for sure, as you have had the sx for twenty yrs and surely if you had had MS for twenty yrs you would be worse though you can have only a mild form but with your fibro chucked in its hard to tell.
what is the eye DR doing about your eye site if you have this pressure issues surely that must indicate something.
I have also heard that peolpe have died from CFS and fibro related disoder. Most of my friends who have had fibro more then 10 yrs have got worse and had ore and more sx.
They said a yr ago i had fibro but i disagree or feel there something else but then so do 3 DR's as fibro should not get this bad i am registered disabled in 1 yr through weakness in my legs and limbs fatiuge but in the muscles and not in yourself.
I have been thinking i have MS for a while but recently doing more research and my sx taking a different turn this last year i thin it might be MG and am seing a neuro soon.
Some illnesses take a long time to present itsself like 2-3 yrs but rarely 20 yrs undx without any strong findings but there have been them so i guess you know your body and you have to fight to get seen again.
good luck.
i feel your sx are fibro and cfs for sure, as you have had the sx for twenty yrs and surely if you had had MS for twenty yrs you would be worse though you can have only a mild form but with your fibro chucked in its hard to tell.
what is the eye DR doing about your eye site if you have this pressure issues surely that must indicate something.
I have also heard that peolpe have died from CFS and fibro related disoder. Most of my friends who have had fibro more then 10 yrs have got worse and had ore and more sx.
They said a yr ago i had fibro but i disagree or feel there something else but then so do 3 DR's as fibro should not get this bad i am registered disabled in 1 yr through weakness in my legs and limbs fatiuge but in the muscles and not in yourself.
I have been thinking i have MS for a while but recently doing more research and my sx taking a different turn this last year i thin it might be MG and am seing a neuro soon.
Some illnesses take a long time to present itsself like 2-3 yrs but rarely 20 yrs undx without any strong findings but there have been them so i guess you know your body and you have to fight to get seen again.
good luck.
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