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Worried about MS
I am a female. I turn 26 in July. Looking back, I've noticed odd symptoms since about August of 2013. I noticed a tremor in my hands. My hands would shake, and occasionally fall asleep (but not that often). I also noticed other symptoms,like dizziness and occasional vertigo, and a few others I cannot recall right now. I lived in NY from August of 2013-May of 2015.
Currently, I have blurred and double vision. Looking back, I probably should have looked into this more. I would always notice it once a year, and would go to the eye doctor, and my glasses prescription would be stronger (for at least the past six years). But the blurriness, in hindsight, while slightly improved, never fully went away. It would go away for a while and come back (and then go away again). When it happened on a more regular basis, I would go to the eye doctor for an exam, and would come out with a new prescription, and the cycle would continue. And here I am today, with a new prescription. Still seeing double and still experiencing blurred vision. I saw an eye specialist recently, who examined me and then asked if I realized that I saw more out of my left eye, and I said yes. Apparently, my right eye doesn't full work when both eyes are open, and only gets to work fully when the left eye is closed. I thought this was normal and never knew there was a medical term for it.
I'm also experiencing cognitive and concentration issues. If I think back, I had some of these issues shortly after I moved to NY, and at some point when I was in college (I was in college from 2008-2012). Now, I have difficulty remembering conversations, some events, and other details. I forget details of a conversations sometimes mere minutes after it has taken place. I have difficulty concentrating while doing a task.
I am currently applying for jobs, writing a book, and will soon begin studying for the Praxis exam to become an English teacher. However, I am so fatigued, have an irregular sleep schedule, and even when I get a good nights' rest, I still feel exhausted, like I need to get even more sleep. I get headaches in the sun (have always been sensitive to heat and humidity). I have chronic migraines, bipolar disorder, and had childhood epilepsy.
Before that, I had some more tests: an EEG, a nerve sensory test, and some other test that I can't remember now. At that time I was nervous about nerve damage due to Parkinson's (the neurologist assured the nerve issues I was having were nothing like the tremors associated with Parkinson's).
A doctor in NY (who actually wasn't qualified) was convinced I was having seizures simply because I had them as a kid, and that his niece had seizures. So he ordered a 72 hour EEG. It was totally normal. He ordered the test even though I told him I'd already had one (but because I couldn't remember the neurologist I'd seen, he wouldn't accept that).
Lately, along with the cognitive and concentration issues and the fatigue, I've noticed weakness, stiffness, pins and needles sensations and occasional loss of balance. The pins and needles have happened in the past, but not as often as they do now, and they would always go away and come back (or at least that's how I remember them). Sometimes, like I'm experiencing them now, I'd wake up in the middle of the night even though little pressure was on my arms or legs, and my entire arm and hand would be tingling. My legs or hands and arms would sometimes fall asleep randomly in the car (while I was sitting with my feet on the floor, and my hands would sometimes fall asleep while my hands were in my lap). My childhood stutter has also come back, and I occasionally experience slurred speech. The stutter varies in severity, and seems to be getting better. I am not in speech therapy at the moment. I first noticed the stutter last summer, it got better, and then started again around November. It didn't get bad until about February of this year.
Should I be worried? I am seeing a neurologist soon. My psychiatrist believes that my symptoms--or at least most of them--are related to my bipolar disorder and epilepsy. I trust this doctor since he is very intelligent and keeps up to date on the latest literature--both psychiatric and neurological. He's found a neurologist who is willing to work with him. Not many neurologists are willing to work with psychiatrists. My psychiatrist said I'd definitely need a full work-up (I've been documenting my symptoms in a journal due to the memory loss. I'd forgotten things to tell doctors and my therapist while in NY and did not want that to happen again).
As much as I trust my doctor, I have a gut feeling that this is not related to my epilepsy. I believe it's something else, and I am worried about MS.
Currently, I have blurred and double vision. Looking back, I probably should have looked into this more. I would always notice it once a year, and would go to the eye doctor, and my glasses prescription would be stronger (for at least the past six years). But the blurriness, in hindsight, while slightly improved, never fully went away. It would go away for a while and come back (and then go away again). When it happened on a more regular basis, I would go to the eye doctor for an exam, and would come out with a new prescription, and the cycle would continue. And here I am today, with a new prescription. Still seeing double and still experiencing blurred vision. I saw an eye specialist recently, who examined me and then asked if I realized that I saw more out of my left eye, and I said yes. Apparently, my right eye doesn't full work when both eyes are open, and only gets to work fully when the left eye is closed. I thought this was normal and never knew there was a medical term for it.
I'm also experiencing cognitive and concentration issues. If I think back, I had some of these issues shortly after I moved to NY, and at some point when I was in college (I was in college from 2008-2012). Now, I have difficulty remembering conversations, some events, and other details. I forget details of a conversations sometimes mere minutes after it has taken place. I have difficulty concentrating while doing a task.
I am currently applying for jobs, writing a book, and will soon begin studying for the Praxis exam to become an English teacher. However, I am so fatigued, have an irregular sleep schedule, and even when I get a good nights' rest, I still feel exhausted, like I need to get even more sleep. I get headaches in the sun (have always been sensitive to heat and humidity). I have chronic migraines, bipolar disorder, and had childhood epilepsy.
Before that, I had some more tests: an EEG, a nerve sensory test, and some other test that I can't remember now. At that time I was nervous about nerve damage due to Parkinson's (the neurologist assured the nerve issues I was having were nothing like the tremors associated with Parkinson's).
A doctor in NY (who actually wasn't qualified) was convinced I was having seizures simply because I had them as a kid, and that his niece had seizures. So he ordered a 72 hour EEG. It was totally normal. He ordered the test even though I told him I'd already had one (but because I couldn't remember the neurologist I'd seen, he wouldn't accept that).
Lately, along with the cognitive and concentration issues and the fatigue, I've noticed weakness, stiffness, pins and needles sensations and occasional loss of balance. The pins and needles have happened in the past, but not as often as they do now, and they would always go away and come back (or at least that's how I remember them). Sometimes, like I'm experiencing them now, I'd wake up in the middle of the night even though little pressure was on my arms or legs, and my entire arm and hand would be tingling. My legs or hands and arms would sometimes fall asleep randomly in the car (while I was sitting with my feet on the floor, and my hands would sometimes fall asleep while my hands were in my lap). My childhood stutter has also come back, and I occasionally experience slurred speech. The stutter varies in severity, and seems to be getting better. I am not in speech therapy at the moment. I first noticed the stutter last summer, it got better, and then started again around November. It didn't get bad until about February of this year.
Should I be worried? I am seeing a neurologist soon. My psychiatrist believes that my symptoms--or at least most of them--are related to my bipolar disorder and epilepsy. I trust this doctor since he is very intelligent and keeps up to date on the latest literature--both psychiatric and neurological. He's found a neurologist who is willing to work with him. Not many neurologists are willing to work with psychiatrists. My psychiatrist said I'd definitely need a full work-up (I've been documenting my symptoms in a journal due to the memory loss. I'd forgotten things to tell doctors and my therapist while in NY and did not want that to happen again).
As much as I trust my doctor, I have a gut feeling that this is not related to my epilepsy. I believe it's something else, and I am worried about MS.
Thanks for reassuring me. The doctor will definitely get my medical records. The only downside is that there are a few doctors' offices where I seem to have bug them until I'm blue in the face to get them to send transcripts/records. The doctors themselves are competent and good at what they do, their office staff not so much...
Anyway, it's good to know that these symptoms might be related to my epilepsy. I just hope I don't start having grand mal seizures again. Though my childhood neurologist assured me years ago it was unlikely.
Anyway, it's good to know that these symptoms might be related to my epilepsy. I just hope I don't start having grand mal seizures again. Though my childhood neurologist assured me years ago it was unlikely.
COMMUNITY LEADER
Naming of any doctor or clinic is unnecessary and not generally recommended for anyone to do! I was specifically pointing out 'what' you have been visually 'diagnosed' with, as an example of factually accurate information. Honestly, your visual issues may or may not be be neurologically caused and if it is neurologically caused, because of your medical history it still may not be related or suggestive of MS.
If your eye doctors specialised in neurology they were probably neuro-ophthalmologists and are more qualified than a general ophthalmologist, either would have been looking for objective evidence of Optic Neuritis, Nystagmus etc which would of been diagnostic evidence of a neurological condition like MS as one 'possible' cause.
"The diagnoses were Right Exo Tropia (right eye turns out) and Right Hyper Tropia (right eye turns up)"
Exotropia and Hypertropia are forms of 'Strabismus' (divergent) which is one of the most common non neurological causes, congenital or acquired. Strabismus can be minor throughout childhood and become more problematic or symptomatic in any age group. Intermittent blurred or double vision in late teens to early adulthood is quite common with Strabismus, but Strabismu can present at any age for many reasons and it isn't usually a visual issue suggestive of MS.
Diplopia (double vision) is associated with epilepsy either primarily or secondary ie medication side effect, brain injury, impact head trauma etc as are other visual issues like Exotropia, Hypertropia, Nystagmus etc so your epilepsy as a neurological explanation does actually have potential.
I truly believe, it would be in your best interest to keep an open mind and not get particularly concerned about MS or anything else at this stage. As i said before, I genuinely believe the issues you've mentioned are 'less likely' to be a neurological condition like MS and 'more likely' related to what you've already been diagnosed with over the years. Your diagnosis of epilepsy may be the 'more likely' explanation, as far as i understand what you have so far mentioned are associated with epilepsy....
With your medical history there will be medical records you can access from your prior neurological assessments, MRI's, nerve tests etc, years of visual assessments and conclusions, hospitalisations, psych assessments, medications etc etc, records are always more factually accurate for anyone to utilise, i'd be advising the same even if you had not experienced cognitive issues and or have a pre-existing diagnosis of bipolar.
The top five is advise given to everybody going to see a neurologist and it's just a 'short and concise' list of your main issues/symptoms/problems eg 1) vision - diplopia, exotropia, hypertropia, 2) cognitive - short term memory, concentration, 3) fatigue 4) sensory - tingles, limbs fall asleep 5) mental health - instability...... BUT it's not uncommon at a first visit, to be basically answering the neurologists list of questions and doing the neurological assessment because of time constraints, and your top 5 may have to wait until your second or third appointment, it depends on the neurologist.
Cheers..........JJ
If your eye doctors specialised in neurology they were probably neuro-ophthalmologists and are more qualified than a general ophthalmologist, either would have been looking for objective evidence of Optic Neuritis, Nystagmus etc which would of been diagnostic evidence of a neurological condition like MS as one 'possible' cause.
"The diagnoses were Right Exo Tropia (right eye turns out) and Right Hyper Tropia (right eye turns up)"
Exotropia and Hypertropia are forms of 'Strabismus' (divergent) which is one of the most common non neurological causes, congenital or acquired. Strabismus can be minor throughout childhood and become more problematic or symptomatic in any age group. Intermittent blurred or double vision in late teens to early adulthood is quite common with Strabismus, but Strabismu can present at any age for many reasons and it isn't usually a visual issue suggestive of MS.
Diplopia (double vision) is associated with epilepsy either primarily or secondary ie medication side effect, brain injury, impact head trauma etc as are other visual issues like Exotropia, Hypertropia, Nystagmus etc so your epilepsy as a neurological explanation does actually have potential.
I truly believe, it would be in your best interest to keep an open mind and not get particularly concerned about MS or anything else at this stage. As i said before, I genuinely believe the issues you've mentioned are 'less likely' to be a neurological condition like MS and 'more likely' related to what you've already been diagnosed with over the years. Your diagnosis of epilepsy may be the 'more likely' explanation, as far as i understand what you have so far mentioned are associated with epilepsy....
With your medical history there will be medical records you can access from your prior neurological assessments, MRI's, nerve tests etc, years of visual assessments and conclusions, hospitalisations, psych assessments, medications etc etc, records are always more factually accurate for anyone to utilise, i'd be advising the same even if you had not experienced cognitive issues and or have a pre-existing diagnosis of bipolar.
The top five is advise given to everybody going to see a neurologist and it's just a 'short and concise' list of your main issues/symptoms/problems eg 1) vision - diplopia, exotropia, hypertropia, 2) cognitive - short term memory, concentration, 3) fatigue 4) sensory - tingles, limbs fall asleep 5) mental health - instability...... BUT it's not uncommon at a first visit, to be basically answering the neurologists list of questions and doing the neurological assessment because of time constraints, and your top 5 may have to wait until your second or third appointment, it depends on the neurologist.
Cheers..........JJ
What do you mean by top five? Top five symptoms? As much as I Iam worried, I am definitely not trying to self-diagnose on the internet. I'm just nervous because I'm going to need a full-work up. My psychiatrist, who has worked with neurologists many times in the past, is very concerned. He thinks it's related to my epilepsy, and I have no idea how that is possible. I'm hoping the neurologist he's referring me to can figure out what the connections are (if there are any), or what is going on.
It's the waiting, and being shuffled around to various doctors that has me nervous. I've already seen two eye doctors that specialize in neurology. It's kind of like a game of "Who will they send me to next?"
My psychiatrist is trying to get me in sooner to see the neurologist. Right now, my appointment is for August 5th at about 4:30.
It's the waiting, and being shuffled around to various doctors that has me nervous. I've already seen two eye doctors that specialize in neurology. It's kind of like a game of "Who will they send me to next?"
My psychiatrist is trying to get me in sooner to see the neurologist. Right now, my appointment is for August 5th at about 4:30.
The journal is good. Present the doctor with a concise version. With your top five. Neurologists are leary of patients getting on the internet and self diagnosing. Neurologists are really brainy and like to figure things out themselves. My Gp told me not to talk too much. Yes you want to get the most out of the appointment.
Alex
Alex
I have done some research, and I certainly hope this is stress related, but it probably is partially neurological. I didn't mention the name of the eye-doctor, because I don't want to necessarily give away information that shows where I might live. The diagnoses were Right Exo Tropia (right eye turns out) and Right Hyper Tropia (right eye turns up).
I understand your concern that my symptoms might be faulty, but my cognitive issues are more short-term. I can normally remember long-term things (but writing them down jolted my memory so to speak, as I hadn't even thought of two things being related). I am definitely going to leave the diagnosing to my neurologist, if there is anything to diagnose. I've also been taking notes in my "symptom journal" at various doctors' appointments. I take it with me to every appointment, not just psychiatric or neurological.
I've been eating better, and am getting on a more regular sleep schedule. Being at home actually helps, since I have less financial and am not stressed about needing a job to pay rent. I just need a job, so there's not the added pressure of a "deadline" by which I need to find work.
I understand your concern that my symptoms might be faulty, but my cognitive issues are more short-term. I can normally remember long-term things (but writing them down jolted my memory so to speak, as I hadn't even thought of two things being related). I am definitely going to leave the diagnosing to my neurologist, if there is anything to diagnose. I've also been taking notes in my "symptom journal" at various doctors' appointments. I take it with me to every appointment, not just psychiatric or neurological.
I've been eating better, and am getting on a more regular sleep schedule. Being at home actually helps, since I have less financial and am not stressed about needing a job to pay rent. I just need a job, so there's not the added pressure of a "deadline" by which I need to find work.
COMMUNITY LEADER
Hi and welcome,
To be perfectly honest I genuinely believe the issues you've mentioned are 'less likely' to be a neurological condition like MS and 'more likely' related to what you've already been diagnosed with over the years.
Which is possibly worsened by fluctuations in your mental health stability, deprived sleep behavioural pattern and in more stressful situations which cause you additional anxiety, as is your more recent or concurrent situation (M/H hospitalisation, prolonged M/H recovery/stability, medications, irregular sleep habits, recent relocation, unemployment, trying to write a book, studying, medical insurance concerns etc).
It actually sounds like it wasn't that long ago (months?) that you were concerned about having Parkinson's and it's after seeing a neurologist and having some tests (neurological assessment, MRI, EMG, blood?) and being reassured about Parkinson's, that you've now started becoming worried about having MS.
I'm assuming you've probably been doing a bit of online research into MS, from the assumed meanings you seem to be making, for you to be worried that your issues are possibly MS related......I would strongly suggest, considering your acknowledged memory and cognitive issues, to not rely on the accuracy of your recall of medical information and current focused documenting attention of issues, which logically could be faulty and utilise the more accurate and reliable information of your actual medical records.
EG "I saw an eye specialist recently, who examined me and then asked if I realized that I saw more out of my left eye, and I said yes. Apparently, my right eye doesn't full work when both eyes are open, and only gets to work fully when the left eye is closed. I thought this was normal and never knew there was a medical term for it. "
You don't actually mention what medical term the opthalmologist diagnosed you with, and what you've described wouldn't necessarily be associated or the same as the visual signs of MS if you were diagnosed with one of the more common visual causes eg Strabismus (lazy eye), convergence disorder etc.
If you don't recall, your records will state the correct medical term you have and having this factual knowledge may be most helpful in understanding if your visual issues are related to a neurological condition like MS or not....
Food for thought............JJ
To be perfectly honest I genuinely believe the issues you've mentioned are 'less likely' to be a neurological condition like MS and 'more likely' related to what you've already been diagnosed with over the years.
Which is possibly worsened by fluctuations in your mental health stability, deprived sleep behavioural pattern and in more stressful situations which cause you additional anxiety, as is your more recent or concurrent situation (M/H hospitalisation, prolonged M/H recovery/stability, medications, irregular sleep habits, recent relocation, unemployment, trying to write a book, studying, medical insurance concerns etc).
It actually sounds like it wasn't that long ago (months?) that you were concerned about having Parkinson's and it's after seeing a neurologist and having some tests (neurological assessment, MRI, EMG, blood?) and being reassured about Parkinson's, that you've now started becoming worried about having MS.
I'm assuming you've probably been doing a bit of online research into MS, from the assumed meanings you seem to be making, for you to be worried that your issues are possibly MS related......I would strongly suggest, considering your acknowledged memory and cognitive issues, to not rely on the accuracy of your recall of medical information and current focused documenting attention of issues, which logically could be faulty and utilise the more accurate and reliable information of your actual medical records.
EG "I saw an eye specialist recently, who examined me and then asked if I realized that I saw more out of my left eye, and I said yes. Apparently, my right eye doesn't full work when both eyes are open, and only gets to work fully when the left eye is closed. I thought this was normal and never knew there was a medical term for it. "
You don't actually mention what medical term the opthalmologist diagnosed you with, and what you've described wouldn't necessarily be associated or the same as the visual signs of MS if you were diagnosed with one of the more common visual causes eg Strabismus (lazy eye), convergence disorder etc.
If you don't recall, your records will state the correct medical term you have and having this factual knowledge may be most helpful in understanding if your visual issues are related to a neurological condition like MS or not....
Food for thought............JJ
Sounds like you have a lot on your plate. Until a neurologist checks you out it would be hard to say what is wrong.
Are you taking care of yourself? When I was in graduate school I studied all the time. I did not eat well and I slept little. I became sick from the way I treated my body.
Alex
Are you taking care of yourself? When I was in graduate school I studied all the time. I did not eat well and I slept little. I became sick from the way I treated my body.
Alex
I didn't begin to notice a pattern until recently, so I didn't think to see a neurologist about these symptoms. Due to the cognitive issues, I was forgetting what symptoms to discuss to my primary care doctor. So I started keeping a "symptom journal" about a month ago.
I will report the doctor to the AMA. He was only a Nurse Practitioner, and should not have been allowed to act as a psychiatrist.
I was also p-d'd myself. Not only with that doctor, but the fact that when I was in the hospital for depression, none of the psychiatrists on my case were more than a year or two out of med school. They gave me a medication I told them would not work since I'd had bad side effects. Needless to say, I left the hospital (June of last year) more unstable than when I entered, and wasn't really stable until early this year. In many ways I'm still trying to find stability. I DID report that hospital and it's staff to the NY Department of Health.
I'll definitely get a full-work up soon. I'm more concerned with getting it done as soon as possible, since I'll be off my parents insurance come August 22nd. I'm allowed to be on it for a month after my 26th bday. Of course, my parents are supportive (thankfully) and will take care of any medical expenses until I find a job with benefits. I am looking for part-time work right now.
I will report the doctor to the AMA. He was only a Nurse Practitioner, and should not have been allowed to act as a psychiatrist.
I was also p-d'd myself. Not only with that doctor, but the fact that when I was in the hospital for depression, none of the psychiatrists on my case were more than a year or two out of med school. They gave me a medication I told them would not work since I'd had bad side effects. Needless to say, I left the hospital (June of last year) more unstable than when I entered, and wasn't really stable until early this year. In many ways I'm still trying to find stability. I DID report that hospital and it's staff to the NY Department of Health.
I'll definitely get a full-work up soon. I'm more concerned with getting it done as soon as possible, since I'll be off my parents insurance come August 22nd. I'm allowed to be on it for a month after my 26th bday. Of course, my parents are supportive (thankfully) and will take care of any medical expenses until I find a job with benefits. I am looking for part-time work right now.
You currently have a lot on your plate, even outside of health concerns! I'm actually surprised at the treatment you've received. (Uh, if you had an unqualified doctor prescribing medical testing for you, please report him to the AMA).
Put it this way. I showed up at a walk-in, cheapy optician when I was 29 complaining of double vision. The exam showed my eyes were looking two different directions (Internuclear Opthalmoplegia). I was sent that moment to the eye and ear hospital who confirmed the finding and sent me immediately to the main hospital which I left 9 days later after every test in the book had been carried out. In other words, double vision in someone my age, my sex, and my race (white) was taken VERY seriously from the word go. And yet, I can't see that anyone's even sent you for an MRI.
This is not to say I have any idea what might be causing your issues. That's for the professionals to determine. Serious conditions are usually less likely than more straight-forward ones. I'm just frankly p-o'd for you.
Put it this way. I showed up at a walk-in, cheapy optician when I was 29 complaining of double vision. The exam showed my eyes were looking two different directions (Internuclear Opthalmoplegia). I was sent that moment to the eye and ear hospital who confirmed the finding and sent me immediately to the main hospital which I left 9 days later after every test in the book had been carried out. In other words, double vision in someone my age, my sex, and my race (white) was taken VERY seriously from the word go. And yet, I can't see that anyone's even sent you for an MRI.
This is not to say I have any idea what might be causing your issues. That's for the professionals to determine. Serious conditions are usually less likely than more straight-forward ones. I'm just frankly p-o'd for you.
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