Aa
Quix
Quix,
I haven't been treated like a hypochondriac per se but I told my last doctor about my symptoms of syncope and visual black outs and they ordered she ordered an EKG and chest x-ray to rule out thoracic outlet compression. One of the Radiologist I worked with read the x-ray and said it looked fine. The Electrophysiologist I worked with said it was probably postural hypotension that caused the last syncopal episode as I tend to run low BP's anyway. I guess in the big scheme of things when you are putting pacemakers and defibrillators in patients with VT and A-Fib it's hard to get all worked up over a syncopal event. I have only had one since childhood. I do get dizzy from time to time and I just take it slow and sit down. I did have an Echo by one of the cardiologist I worked with and he said it looked good. I have palpitations from time to time and after I passed out he susgested we make sure I didn't have a shunt or something congenital going on.
After doing a little research online I read that childhood onset MS usually presents with ON and this made me think of the frequent visual blackouts I would have as a child and then the onset of depression started about age 14. Did you read the post about the incident I had in my childhood where I couldn't get out of bed and spent the night in the hospital? I could not make my muscles move. My mom got me up. Don't remember how weak I was and don't want to start asking her a bunch of questions about it right now. She is too perceptive and I don't want to scare her.
What I am mostly concerned with is the fact that I have noticed that I am not as sharp mentally as I was in my late 20's. I often forget things quickly after asking and my short term memory is bad. My husband and daughter (15 years old) tease me because I ask them a question and then within say 5 mins I ask again and they say you just asked me that and sometimes I ask a 3rd time. Not sure if it's memory failure, poor concentration or both. As for the emotional lability, this is really bad for me. I have become more aware of it as my husband has brought it up to me as he is on the receiving end alot of the time. He says I switch gears like he is talking to a completely different person. That scares me too because I am becoming more aware of it. I have experienced a few episodes of uncontrollable laughing but it's usually been at a joke or something approp. but at the end of it people are looking at me going ok it wasn't that funny and I knew it too. Kinda like a sneezing fit that starts and you can't stop even though you are trying????
As for the urinary freq. anytime I drink something I know that I should just start heading to the bathroom. I always say I have a bladder the size of a pea.
I will make the timeline and post it. I noticed in my reading that the average onset of MS is 35-37 by one reference.
One thing that I do know is that I have a feeling of constant "muscle alertness?" even in the setting of always feeling fatigued. Like my whole body is constantly at attention. I do this also with my chest when I breathe such that it feels like I keep my lungs slightly over inflated and then breathe with shallow breaths. May be nothing but stress or some sort of psych related issue. The only thing I have had though is depression. It's like I have to make myself relax. Even when I lay down to go to sleep and alot of times if I don't force myself to relax by remembering to let all my muscles relax I will wake up feeling this same tension.
I just changed hospitals (and insurance companies) last December and haven't established a rapport with any one doc yet. I am assigned to someone and will make an appt after I make the timeline. Having a scarry thing going on with my husband this last week. He woke up and had bad jaw pain and couldn't open his mouth. Went in and had x-ray and they found a tumor in his jaw. Had CT and waiting for results. Kinda put my issues on the back burner for now.
Thank you for all your advice. What do you think about the emotional and cognitive symptoms? Also the onset of depression at an early age and the visual symptoms so early? I know I have to get in to get a thorough eval and MRI. Just trying to get over one hump at a time.
I hope you are doing well. I learn so much by reading your posts. It is a blessing for all that we have you to consult. (off the record)
Thanks again,
Angel
I haven't been treated like a hypochondriac per se but I told my last doctor about my symptoms of syncope and visual black outs and they ordered she ordered an EKG and chest x-ray to rule out thoracic outlet compression. One of the Radiologist I worked with read the x-ray and said it looked fine. The Electrophysiologist I worked with said it was probably postural hypotension that caused the last syncopal episode as I tend to run low BP's anyway. I guess in the big scheme of things when you are putting pacemakers and defibrillators in patients with VT and A-Fib it's hard to get all worked up over a syncopal event. I have only had one since childhood. I do get dizzy from time to time and I just take it slow and sit down. I did have an Echo by one of the cardiologist I worked with and he said it looked good. I have palpitations from time to time and after I passed out he susgested we make sure I didn't have a shunt or something congenital going on.
After doing a little research online I read that childhood onset MS usually presents with ON and this made me think of the frequent visual blackouts I would have as a child and then the onset of depression started about age 14. Did you read the post about the incident I had in my childhood where I couldn't get out of bed and spent the night in the hospital? I could not make my muscles move. My mom got me up. Don't remember how weak I was and don't want to start asking her a bunch of questions about it right now. She is too perceptive and I don't want to scare her.
What I am mostly concerned with is the fact that I have noticed that I am not as sharp mentally as I was in my late 20's. I often forget things quickly after asking and my short term memory is bad. My husband and daughter (15 years old) tease me because I ask them a question and then within say 5 mins I ask again and they say you just asked me that and sometimes I ask a 3rd time. Not sure if it's memory failure, poor concentration or both. As for the emotional lability, this is really bad for me. I have become more aware of it as my husband has brought it up to me as he is on the receiving end alot of the time. He says I switch gears like he is talking to a completely different person. That scares me too because I am becoming more aware of it. I have experienced a few episodes of uncontrollable laughing but it's usually been at a joke or something approp. but at the end of it people are looking at me going ok it wasn't that funny and I knew it too. Kinda like a sneezing fit that starts and you can't stop even though you are trying????
As for the urinary freq. anytime I drink something I know that I should just start heading to the bathroom. I always say I have a bladder the size of a pea.
I will make the timeline and post it. I noticed in my reading that the average onset of MS is 35-37 by one reference.
One thing that I do know is that I have a feeling of constant "muscle alertness?" even in the setting of always feeling fatigued. Like my whole body is constantly at attention. I do this also with my chest when I breathe such that it feels like I keep my lungs slightly over inflated and then breathe with shallow breaths. May be nothing but stress or some sort of psych related issue. The only thing I have had though is depression. It's like I have to make myself relax. Even when I lay down to go to sleep and alot of times if I don't force myself to relax by remembering to let all my muscles relax I will wake up feeling this same tension.
I just changed hospitals (and insurance companies) last December and haven't established a rapport with any one doc yet. I am assigned to someone and will make an appt after I make the timeline. Having a scarry thing going on with my husband this last week. He woke up and had bad jaw pain and couldn't open his mouth. Went in and had x-ray and they found a tumor in his jaw. Had CT and waiting for results. Kinda put my issues on the back burner for now.
Thank you for all your advice. What do you think about the emotional and cognitive symptoms? Also the onset of depression at an early age and the visual symptoms so early? I know I have to get in to get a thorough eval and MRI. Just trying to get over one hump at a time.
I hope you are doing well. I learn so much by reading your posts. It is a blessing for all that we have you to consult. (off the record)
Thanks again,
Angel
I guess my weekend ends on Tuesday, sorry. But, I'm here now. If I can just get this to post, I've lost two so far today.
I read both your narrative and your timeline.
My first thought is that the syncopal episode that you describe and the "visual blackouts" in your younger days do not at all sound either neurologic events or optic neuritis. The kind of "visually blacking out" without quite losing consciousness is a form of orthostatic hypotension. It is often, but not always related to changing positions or being overheated. It is extremely common to see in pediatric practice (like twice a week). The vision loss in on is persistent, lasting at least 24 hours.
The two bouts of paralysis I do not understand. The second one was very brief, so not likely a manifestation of MS. Were it not for the fact that you felt weak afterwards, I woulnd wonder if you had a episode of "sleep paralysis." This happens when someone is barely arrousing from sleep and finds they cannot move. As they lie there, time seems longer than it is, they become frightened and then movement returns. It is a common, frightening sleep disturbance. Normally it does not indicate any type of pathology (I think).
Depression, as you know, has many causes, and is non-specific. It is certainly more common in the post-partum period and as a part of an apparent PTSD after the death of your brother, BTW - my sympathies. It is also an intrinsic part of MS. When retrospective studies have looked at episodes of major clinical depression, people with MS have often had one or more in the years preceding apparent onset of clinical symptoms. When people's first symptom of MS is an affective disorder, like depression, their diagnosis is almost always delayed until the onset of overt neurological symptoms and hope the psych is alert to the poosibility.
Increased emotional lability (quickly changing moods - like from calm to explosive, mellow to irritable, calm to depressed, etc) is also seen very frequently as a part of the depression of MS. However, it is also seen in depression in general, so it is somewhat non-specific. But, it really does catch people by surprise and can casue a lot of hard feelings (personal experience)
The inappropriate laughter or crying (way out of proportion to the stimulus) is called the psuedobulbar effect" seen in MS and it should raise the possiblility of MS in physician hearing about it.
The weakness of your legs in 2002, how long did it last?
The monthly diarrhea is hormonal. The some prostaglandin that casue the smooth muscle of the uterus to contract in cramps can also have a stimulation of the smooth muscle of the colon causing menstrual diarrhea.
You began having paresthesia of your hands (both?) during pregnancy, depression afterward and shoulder and neck pain. These may well have been early MS symptoms, but are too nonspecific to say.
Present. Are you saying that you have had weakness or easy fatigability of your legs (both?) since 2002? With the tripping and loss of coordination have you had a thorough evaluation by PT to document the strength and tone of your muscles. I would recommend this.
I don't totally understand the rigidly holding your chest and shallow breathing. It is seen in chronic anxiety, but it can also be neurological. I would recommend a sleep study and PFT's. Both can usually be done by a pulmonologist.
Your cognitive defects sound like what is seen in MS and some other conditions. I would HIGHLY recommend neuropsych testing. This would be especially important given the kind of decisions you need to make (quickly) in your job.
The blurry vision with fatigue could be a fatiguing of the focusing mechanism of the eye - possibly neurological. Floaters are extremely common and increase as we move through adulthood.
Next time your vision goes black, meaning your BP has fallen, don't lift your arms, lol.
The explosive vomiting sounds like a distal esophageal spasm and may indeed be neruological. You need a swallow study.
And, from all of this, it sounds like you have never presented to a neurologist. You really do need a thorough neurological exam to rule out muscle strength and tone problems, balance issues, see what your reflexes are like. Your need an MRI of your head and spine.
Finally, the episodes you describe in your timeline of awakening unable to move sounds like classic "sleep paralysis." Just search those two words and you'll find a wealth of info.
So things you need: Neuro exam, MRIs, Sleep study, swallow study, poss. neuropsych testing, maybe a PT referral, maybe a tilt table test (ask you cardio). It is the classic presentation of MS, but MS needs to be ruled out. You need a lot of evaluation to get some idea of which of these are neurological and which aren't. I don't see any indication of a childhood presentation of MS, but even though I was a pediatrician I never saw a case younger than 16 and I didn't follow her (though I diagnosed her).
I hope this has been helpful. I know you are concerned at even raising the question of MS given your job. Would you have to be worked up in your own medical center?
Quix
I read both your narrative and your timeline.
My first thought is that the syncopal episode that you describe and the "visual blackouts" in your younger days do not at all sound either neurologic events or optic neuritis. The kind of "visually blacking out" without quite losing consciousness is a form of orthostatic hypotension. It is often, but not always related to changing positions or being overheated. It is extremely common to see in pediatric practice (like twice a week). The vision loss in on is persistent, lasting at least 24 hours.
The two bouts of paralysis I do not understand. The second one was very brief, so not likely a manifestation of MS. Were it not for the fact that you felt weak afterwards, I woulnd wonder if you had a episode of "sleep paralysis." This happens when someone is barely arrousing from sleep and finds they cannot move. As they lie there, time seems longer than it is, they become frightened and then movement returns. It is a common, frightening sleep disturbance. Normally it does not indicate any type of pathology (I think).
Depression, as you know, has many causes, and is non-specific. It is certainly more common in the post-partum period and as a part of an apparent PTSD after the death of your brother, BTW - my sympathies. It is also an intrinsic part of MS. When retrospective studies have looked at episodes of major clinical depression, people with MS have often had one or more in the years preceding apparent onset of clinical symptoms. When people's first symptom of MS is an affective disorder, like depression, their diagnosis is almost always delayed until the onset of overt neurological symptoms and hope the psych is alert to the poosibility.
Increased emotional lability (quickly changing moods - like from calm to explosive, mellow to irritable, calm to depressed, etc) is also seen very frequently as a part of the depression of MS. However, it is also seen in depression in general, so it is somewhat non-specific. But, it really does catch people by surprise and can casue a lot of hard feelings (personal experience)
The inappropriate laughter or crying (way out of proportion to the stimulus) is called the psuedobulbar effect" seen in MS and it should raise the possiblility of MS in physician hearing about it.
The weakness of your legs in 2002, how long did it last?
The monthly diarrhea is hormonal. The some prostaglandin that casue the smooth muscle of the uterus to contract in cramps can also have a stimulation of the smooth muscle of the colon causing menstrual diarrhea.
You began having paresthesia of your hands (both?) during pregnancy, depression afterward and shoulder and neck pain. These may well have been early MS symptoms, but are too nonspecific to say.
Present. Are you saying that you have had weakness or easy fatigability of your legs (both?) since 2002? With the tripping and loss of coordination have you had a thorough evaluation by PT to document the strength and tone of your muscles. I would recommend this.
I don't totally understand the rigidly holding your chest and shallow breathing. It is seen in chronic anxiety, but it can also be neurological. I would recommend a sleep study and PFT's. Both can usually be done by a pulmonologist.
Your cognitive defects sound like what is seen in MS and some other conditions. I would HIGHLY recommend neuropsych testing. This would be especially important given the kind of decisions you need to make (quickly) in your job.
The blurry vision with fatigue could be a fatiguing of the focusing mechanism of the eye - possibly neurological. Floaters are extremely common and increase as we move through adulthood.
Next time your vision goes black, meaning your BP has fallen, don't lift your arms, lol.
The explosive vomiting sounds like a distal esophageal spasm and may indeed be neruological. You need a swallow study.
And, from all of this, it sounds like you have never presented to a neurologist. You really do need a thorough neurological exam to rule out muscle strength and tone problems, balance issues, see what your reflexes are like. Your need an MRI of your head and spine.
Finally, the episodes you describe in your timeline of awakening unable to move sounds like classic "sleep paralysis." Just search those two words and you'll find a wealth of info.
So things you need: Neuro exam, MRIs, Sleep study, swallow study, poss. neuropsych testing, maybe a PT referral, maybe a tilt table test (ask you cardio). It is the classic presentation of MS, but MS needs to be ruled out. You need a lot of evaluation to get some idea of which of these are neurological and which aren't. I don't see any indication of a childhood presentation of MS, but even though I was a pediatrician I never saw a case younger than 16 and I didn't follow her (though I diagnosed her).
I hope this has been helpful. I know you are concerned at even raising the question of MS given your job. Would you have to be worked up in your own medical center?
Quix
Angel,
Your post sounds familiar to me, too. I got a kick of your husband and daughter...it's just like my house!
I hope you husband is ok- I'll keep you both in my thoughts and prayers.
Around age 9-ish, couldn't get out of bed one morning and called for my mother. I remember being frightened, and laying there for a long time. She figured I slept wrong. 9 seems very early for symptoms, but thought I'd mention it.
I have a 14 year old daughter who has figured out my bad memory. "Don't you remember, you said I could.....".
If I stand up from bending over in the garden or picking something up, my vision turns into a black tunnel, my ears go Vroom! Vroom! with my heartbeat and I become very lightheaded. My blood pressure is normally around 90's/70's. I've never asked a doctor about this- just figured it was due to my low blood pressure and normal.
Take care,
Bethany
Hi there,
Sorry to read about all of your problems. Your symptoms sound so similar to mine it's not funny! I have Postural Hypotension and am also having problems with my heart. Have had one Holter monitor put on and now I'm having a second put on this Friday.
Your episode of not being able to move your muscles sounds so familiar, except it happened to me at age 13 and it got progressively worse over a couple of weeks until I couldn't move my legs at all. I am only 24 and I am having the same memory issues as you are - my Nanna told me today that we have the same problems, which is cool but she's 81!!!
Please read my post 'CFS to MS??' and tell me what you think. I haven't seen a Neuro yet and I will also be going to an ENT for my balance issues and cysts in my sinuses.
Would be good to hear from you.
Mel
Sorry to read about all of your problems. Your symptoms sound so similar to mine it's not funny! I have Postural Hypotension and am also having problems with my heart. Have had one Holter monitor put on and now I'm having a second put on this Friday.
Your episode of not being able to move your muscles sounds so familiar, except it happened to me at age 13 and it got progressively worse over a couple of weeks until I couldn't move my legs at all. I am only 24 and I am having the same memory issues as you are - my Nanna told me today that we have the same problems, which is cool but she's 81!!!
Please read my post 'CFS to MS??' and tell me what you think. I haven't seen a Neuro yet and I will also be going to an ENT for my balance issues and cysts in my sinuses.
Would be good to hear from you.
Mel
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