Thanks for answering my question. So, I've had years of pretty severe fatigue that essentially shuts down my brain. I slur my speech, can't find words, forget things, have "word soup," etc. It comes on quickly and stays around for a few minutes to a couple of hours. I've also had IBS for a few years, and I urinate a lot (times a day, more of less). In addition, I sometimes have tingling in my toes, not symmetrically, but bilaterally. Sometimes it's one toe, sometimes it's several toes. It feels like something is crawling around inside them, and sometimes my toes twitch, tingle, and cramp up. I also have had low vitamin D and high billirubin in the past.
Flash forward to a month ago. I had a cold and a fever the weekend before. About five days later, fingers go cold and numb, and that coldness travels up the back of my hand and forearm and stays there for about four days. My ring and pinkie finger have reduced sensation and tingling as well. I then develop a tremor in my left hand, and start waking up in the morning with nystagmus that goes away after a few minutes. No headache, little nausea, and no other pain.
All symptoms have disappeared except for the nystagmus in the morning. I went to my PMP, and she told me it was stress and anxiety. But I'm not stressed or anxious, although I do have bouts of anxiety. She says my arm problem was a pinched nerve from my bag. She prescribed me anti-anxiety medication, and at one point suggested I might be developing schizophrenia and/or bipolar. Uh, what??? So, I make an appointment with a neurologist, because that PMP sounded cray. I wait a month for that appointment only to be seen for five minutes (no complete exam), and was told she didn't know what happened, but it wasn't worth investigating further.
Am I silly for feeling like no one's listening? Should I pursue this further or let it go? If it is something like MS, it will happen again. So, maybe I should just wait and see if anything else happens.
I'm a 29-year old female, by the way, if that helps.
I can't tell you what is going on with you or if it MS. I can tell you to listen to yourself. You know your body. If your Primary Care is not listening may be you need another one.
I do have MS. A few years ago I started having other issues. It was put in my chart I was anxious and exaggerate. The nurse would roll her eyes at me all the time. I kept saying I don't know what wrong but something is. Finally last year they found I had Cancer. Now the doctor sees me on a minutes notice and no one says I exaggerate or am anxious. I kept pushing. I knew something was terribly wrong.That nurse is super nice to me now.
The only thing I regret is I did not push harder. I did the wait and see too long. I should have pushed for tests.
The moral is to listen to yourself and to advocate for yourself.
Doctors are only human and our medical system is so specialized things get missed. The kinda of Cancer I have is one of the most missed diagnoses out there. A Gynecologist, a ER Doctor, and gastroentrologist all missed it. They all blamed my MS.
Wow. That's awful. I appreciate your response though. It makes me feel better about not being able to let it go. I think there's nothing worse than being told you know less about yourself than someone else does, someone who doesn't even know you very well. I'm sorry that you were ignored :/
hmmmmmm if your sx's are being caused by MS or some other physiological condition or even something psychological, would seem to me to be undetermined, if you haven't even had any tests, to look for any of the possible/probable causes. Regardless i'm recommending you find a dr who didn't get their qualification out of a cornflakes packet.............Seriously this the first time i've heard of schizophrenia and/or bipolar being caused by a hand bag..............you definitely need a different dr!
My mother actually is dx with bipolar and so many medical mistakes have happened to her over the years, simply because her GP automatically assumed what ever it was, was due to her M/H and only through other dr's has the tests happened and proved the correct medical causation. Similar situations started happening to my daughter, told she was stressed but it turned out to be anaemia and very low in vit B, told she was having anxiety attacks but it turned out she had a contagious lung infection which was why she couldn't breath.
Sure, some times people do have health anxiety or conversion disorder but if mental health is just suspected as causation, then its in you best interest to get that properly investigated, by someone who specialises in mental health and not accept it coming from a GP. Even if M/H is total rubbish, if its being blamed you'd still be better off getting a referral, to get your mental health fully assessed by either a psychologist or a psychiatrist, if its wrong it should be helpful to have the M/H idea taken off your list of possibles.
Let us know how you get on
PS my mums going to love hearing her hand bag caused her bipolar lol
Haha. She didn't say my handbag would lead to bipolar, but that the handbag was pinching a nerve that caused cold/tingling in the finger. When I told her about the fatigue and whatnot, she said it was anxiety/depression. I said I wasn't anxious or depressed, and she was like, um, yes you are honey, here are some hard drugs that might make you feel like killing yourself. Oh, goody! Then she said it might not be the handbag causing the strange sensations, that it could be a precursor to something more serious, like bipoloar or schizophrenia. That was when I knew I needed another doctor.
Sorry, I didn't really make that very clear in my original post.
I'm so fascinated with how anxiety/depression/mental illness (which I've never even been diagnosed with, by the way) is some kind of immunity. Apparently, people who are on edge can't get sick! The weird thing is that I had only seen that PCP once before for a pretty understandable reason, so it wasn't like I was coming into her office every day with a new illness. I don't think it's all that crazy to get my fatigue and weird sensations checked out; all of my friends were appalled when I told them what she said. I just didn't expect to be told I was about to develop a serious psychological condition, haha. Even the neurologist I saw said that my fatigue was not normal, but hey, we don't really know anything about Chronic Fatigue Syndrome or any of those other silly "illnesses" anyway, so there's nothing you can do about it. The entire experience has been... so weird...
I guess it's not that big of a deal. No one is coming on here saying my symptoms were their first major symptoms, so I'll just let it go and see another doctor if new symptoms form, which they probably won't. Thank you for indulging me a bit, all. I wish you all luck with your health and well-being.
We all have our very own MS story. One of the fun things about this disease is that if you ask 100 people t describe their MS, you'll hear 100 different stories :-)
One of my first presenting symptoms was bilateral foot numbness. I didn't have any other symptoms. I have also never experienced it again. There have been 2 other major relapses but no more foot numbness. MS cannot be predicted. It will do what it wants, whenever it wants.
The fatigue you mentioned is a large area of overlap for us. Most of us have had periods where going into the kitchen for a glass of water required a nap. Visual issues are also common. Some are related to inflammation of the optic nerve, others like nystagmus, are related to the muscles that control eye movement. At the peak of my last relapse I had double vision all the time. It was caused by nystagmus.
We have some symptoms that are caused by current inflammation and can be treated by high dose steroids. Others are the result of nerve damage and are around most of the time. My nystagmus keeps me company for 2-3 minutes every time I wake up, either first thing in the morning or from a nap.
There is no way to say that a given set of symptoms is or isn't MS. I think you are wise to see if there is a single thread running through yours. Doctors that suggest your symptoms are the result of anxiety or a handbag are to be replaced ASAP. I would encourage you to look for a doctor that will listen to you and actually hear what you're saying :-)
That is good to know. Thank you, kwarendorf. The nystagmus has got to be the weirdest feeling I can think of. I can't get out of bed until it stops because it's so... weird feeling? It's interesting that you have it in the morning too. I'm not sure what causes that. Anyway, I appreciate you taking the time to answer. This is all really helpful, actually, so thank you!
:D i know i was stretching your story a tad, though hopefully my aim at giving you a giggle, [with the ridiculous] was achieved ;o)
My main point, (which probably got lost in my kidding around sorry i'm an ozzie), was "not to let it go"......get a second opinion!
There are many conditions (mimics) that have similar sx's and more often they are the secondary sx's of MS eg tingling, fatigue, cognitive issues etc, so not very specific or suggestive of what could be the problem BUT then there are some sx's that are not as common to the mimics eg visual sx's - optic neuritis, nystagmus, diplopia (double) etc so are more primary symptoms and these are more suggestive because they alone limit the possibilities.
I honestly believe something is going on, what that is though is yet to be determined and finding out what is causing your sx's should be properly investigated. So from my perspective, it is worth you getting a second opinion, at the very least your visual sx of nystagmus should be assessed, because it is never in any ones best interest to ignore problems with their eye sight, so please don't let that one go!
Unfortunately there is no immunity, but when someone is dx with a mental health condition or even suspected, if the dr already has a preconceived perception of their patient, they 'may' focus on their patients known or suspected psychological issue for cause, before they even consider any other possible causes. It's normal human psychology, 'anyone' can be more focused on the information that fits their thinking and disproportionately exclude what doesn't.
A fresh set of eyes, can make a significant difference in a dr's approach to a patients problems, doesn't mean the actual dx will be any different but if their test results prove that they do have something 'else' medically wrong with them, then their psychological issues were irrelevant. My mother is actually the kind of person who doesn't go to the dr's unless we drag her there, (hmmmm i wondered where i got that from lol) she predominantly saw her dr for M/H script renewals and that was basically the focus for everything else, new eyes and the story is very different.
I think the moral to this story is that, if the medical opinion your getting is questionable, then it is in your best interest to seek a second opinion!
It did make me giggle, definitely. In the last month, I've been "diagnosed" with handbag-itis, pre-bipolar, pre-schizophrenia, anxiety, depression, and the I-don't-know-but-it's-not-worth-investigating "virus." No actual tests, of course, unless you consider the two-minute "exam" wherein I never even got off my tuchas. It's like a bad comedy.
Your advice is definitely valuable, as is everyone's here, and everyone seems to be saying pretty much the same thing, so that's good.
Can I ask one other question, though? The neurologist I saw said the nystagmus could be caused by dry eye in the morning. Is that true? I can't seem to find anything about that online. She did shine a light in my eye, particularly my left eye, and she stared at it for a while. Would she be able to find anything relevant that way? In other words, if something more serious is causing nystagmus, would that be evident?
There's also a couple of Health Pages devoted to this.
But back to Nystagmus...
Nystagmus results from the instability or impairment of the system responsible for controlling eye movements. When nystagmus develops in early childhood, it can be caused by a problem with the visual pathway from the eye to the brain. Often the child has no other eye or medical problem. Acquired nystagmus, which occurs later in life, can be the symptom of another condition such as stroke, multiple sclerosis or a blow to the head.
Other causes of nystagmus include:
Lack of development of normal eye movement control early in life
Very high refractive error, e.g. nearsightedness (myopia) or astigmatism
Inflammation of the inner ear
Medications such as anti-epilepsy drugs
Central nervous system diseases
The rest of the entry can be read here:
lol "handbag-itis" I think that's closely related to Kardashi-itis :D
Ask as many questions as you like, and we'll do our very best to find the answers for you :D collectively we've picked up a thing or two, so someone will usually know something useful!
Nystagmus isn't caused by dry eyes - "Nystagmus is caused by an abnormal function in the areas of the brain that control eye movements. Nystagmus may be either present at birth or develop later in life."
What is Nystagmus - "Nystagmus may be defined as a periodic rhythmic ocular oscillation of the eyes. The oscillations may be sinusoidal and of approximately equal amplitude and velocity (pendular nystagmus) or, more commonly, with a slow initiating phase and a fast corrective phase (jerk nystagmus)."
The above emedicine article explains all the different types of nystagmus and goes into a lot of detail........ see page 2 'Pathophysiology'
Personally, i first started to have periods of time where my vision would just go blurry and optometrist's couldn't find anything wrong, I even had 20/20 vision and everytime i had my eyes tested they were technically perfectly normal. lol didn't change the fact that sometimes all i saw was blurred, so me and my perfect eyes lol let it go......
It's been a few years since the nystagmus showed during testing but the end result is that i have double vision 24/7 i basically can't read very well without it magnified eg H = # so I guestimate the hieroglyphics and don't freak out when people have an extra set of eyeballs on their forehead lol Most of the time my eye ball moving isn't visible to others because its a constant rapid movement too fast to see, but if i look to the side others can easily see my eyeball bouncing a jig. I am more aware that i actually have eyeballs when i try to sleep, as soon as i close my eyes, the tremor is visibly moving them, which is fun.......not!
I don't think nystagmus is always obvious, well it can be but sometimes it can't be seen outside of testing environments, so an optometrist or ophthalmologist is who you should see (lol no pun intended) to determine what visual issues your are actually having.
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