Help me talk to my doctor about my symptoms
January 14, 2018 9:45 AM Subscribe
I'm having this sensation of vibration coming from the center of my torso which is mild and ignorable at first but then gets stronger over a while until it manifests in things like hand tremors so strong I can't write or type or eat, or also my legs nearly giving way under me when I try to walk. As the trembling gets stronger, a sort of mental fog takes over me making it hard to function. Then over time it fades out until it is just a slight internal tremor or is actually gone for a while.
This has been going on since last week badly enough that I've missed some work. Actually, it's been going on for a while but not to the level where I'm basically debilitated by this.
I went to the doctor yesterday about this and the nurse that was interviewing me kept referring to my torso sensation as "abdominal pain" which it absolutely is not. I have another appointment Tuesday morning. How can I describe what I'm feeling clearly enough?
Also, does anyone have any clue what might be going on with me? Because the medical staff seemed to not have any immediate answers or even suggestions about what I can do about trying to go to work with this condition.
I'll be happy to answer medical history queries or whatever. This is so strange and difficult and I really need to get it figured out.
This has been going on since last week badly enough that I've missed some work. Actually, it's been going on for a while but not to the level where I'm basically debilitated by this.
I went to the doctor yesterday about this and the nurse that was interviewing me kept referring to my torso sensation as "abdominal pain" which it absolutely is not. I have another appointment Tuesday morning. How can I describe what I'm feeling clearly enough?
Also, does anyone have any clue what might be going on with me? Because the medical staff seemed to not have any immediate answers or even suggestions about what I can do about trying to go to work with this condition.
I'll be happy to answer medical history queries or whatever. This is so strange and difficult and I really need to get it figured out.
Response by poster: I've been keeping food in my system so blood sugar doesn't sound like a part of it, but maybe. I sometimes get HOT sweats during these periods, usually toward the end of the height of the tremors when it's, for lack of a better term, retreating back to my middle.
posted by hippybear at 9:59 AM on January 14, 2018
posted by hippybear at 9:59 AM on January 14, 2018
Anxiety attacks or panic attacks?
posted by Murderbot at 10:02 AM on January 14, 2018 [2 favorites]
posted by Murderbot at 10:02 AM on January 14, 2018 [2 favorites]
Response by poster: During the mental fog time I feel pretty anxious or panicky. I can sort of "breathe my way out" of those, but yeah I'd say I'm having those. I was so disoriented in my own house one day last week I was standing in the hallway wondering where my bathroom was.
posted by hippybear at 10:04 AM on January 14, 2018
posted by hippybear at 10:04 AM on January 14, 2018
Best answer: I'm not crazy about the source, but this article seems to describe something like your initial abdominal sensation. It calls it "internal vibrations" and suggests that they're related to tremors, which you're also experiencing. I agree about keeping a diary of your symptoms, and it sounds like your next step may be to ask for a referral to a neurologist.
posted by ArbitraryAndCapricious at 10:09 AM on January 14, 2018 [6 favorites]
posted by ArbitraryAndCapricious at 10:09 AM on January 14, 2018 [6 favorites]
I don't know what it is, but you asked how to describe it and imho your first paragraph does that really well. I would also mention when it started, the time frame (both frequency and how long each occurrence lasts), change in frequency over time, and the fact that it's affecting you enough that you're missing work.
posted by 2 cats in the yard at 10:25 AM on January 14, 2018 [1 favorite]
posted by 2 cats in the yard at 10:25 AM on January 14, 2018 [1 favorite]
do you find the muscles of your hands and feet tightening and contracting during the height of this? like you hands go into a claw shape? if so, it may be a blood-sugar or adrenaline thing (this is a thing that has happened to me from 1) bad blood-sugar drop 2) adrenaline rush after accident/injury)
are you starting or discontinuing any medications?
posted by supermedusa at 10:26 AM on January 14, 2018 [2 favorites]
are you starting or discontinuing any medications?
posted by supermedusa at 10:26 AM on January 14, 2018 [2 favorites]
otherwise, yes please request referral to neurologist
posted by supermedusa at 10:28 AM on January 14, 2018 [1 favorite]
posted by supermedusa at 10:28 AM on January 14, 2018 [1 favorite]
I can't give you a definitive answer, but I'll second Murderbot: This tracks very closely with my own experience of panic attacks.
(That's just one anecdotal data point; I'm not a doctor and the other explanations offered here also seem plausible to me. Seeing a neurologist seems prudent.)
posted by a mirror and an encyclopedia at 10:29 AM on January 14, 2018 [1 favorite]
(That's just one anecdotal data point; I'm not a doctor and the other explanations offered here also seem plausible to me. Seeing a neurologist seems prudent.)
posted by a mirror and an encyclopedia at 10:29 AM on January 14, 2018 [1 favorite]
Response by poster: I am not taking any medications at the moment.
posted by hippybear at 10:30 AM on January 14, 2018
posted by hippybear at 10:30 AM on January 14, 2018
Response by poster: So, panic attacks... do they just happen, even without any trigger? Also, I don't really feel any sense of panic during much of this process, just mostly annoyed that the vibration is starting again for reasons I don't understand. It's really only at its height when I'm tremoring and can't walk and can't really think that I start to feel any sense of what I might call panic.
posted by hippybear at 10:32 AM on January 14, 2018
posted by hippybear at 10:32 AM on January 14, 2018
Best answer: the nurse that was interviewing me kept referring to my torso sensation as "abdominal pain" which it absolutely is not. I have another appointment Tuesday morning. How can I describe what I'm feeling clearly enough?
"Episodes of internal tremors (non-painful; like an electric toothbrush running) originating in torso; mild at first, progressing to a strong sensation of vibration that spreads over [hours] to tremors in hands and loss of coordination in legs. Increase in vibration sensation is accompanied by brain fog and occasional mild disorientation. Fog, vibrations, and loss of coordination fade over [hours]; sensation then becomes strongly muted or ceases. Has occurred X times over Y period, with a particularly intense episode date/last week."
Not a doctor, just paraphrasing. Does that help? I hope you get answers soon.
posted by MonkeyToes at 10:55 AM on January 14, 2018 [6 favorites]
"Episodes of internal tremors (non-painful; like an electric toothbrush running) originating in torso; mild at first, progressing to a strong sensation of vibration that spreads over [hours] to tremors in hands and loss of coordination in legs. Increase in vibration sensation is accompanied by brain fog and occasional mild disorientation. Fog, vibrations, and loss of coordination fade over [hours]; sensation then becomes strongly muted or ceases. Has occurred X times over Y period, with a particularly intense episode date/last week."
Not a doctor, just paraphrasing. Does that help? I hope you get answers soon.
posted by MonkeyToes at 10:55 AM on January 14, 2018 [6 favorites]
Is this associated with any particular movement, standing up, stretching your neck etc? Not to freak you out but can get TIAs that are associated with tremors like that. My aunt had them and had to have a surgery to clear her carotid artery out. Basically it was mostly occluded and when she turned a certain way it would totally occlude an cause the TIA. She's fine now.
Don't let them fob you off with "anxiety" if you don't feel anxious. What you describe isn't normal.
posted by fshgrl at 11:37 AM on January 14, 2018 [2 favorites]
Don't let them fob you off with "anxiety" if you don't feel anxious. What you describe isn't normal.
posted by fshgrl at 11:37 AM on January 14, 2018 [2 favorites]
Response by poster: No, it just starts, lasts for a while (meaning usually hours with perhaps more than one peak/valley pattern), and then goes away, sometimes fading out, sometimes like a switch being flipped off. And then might be back later the same day or might be basically gone or at least minimally troubling for several days, and then back again.
Like, today, I was awakened at 3am by feeling the vibration. I had just been asleep, that's all. And had slept without issue for hours.
posted by hippybear at 11:42 AM on January 14, 2018
Like, today, I was awakened at 3am by feeling the vibration. I had just been asleep, that's all. And had slept without issue for hours.
posted by hippybear at 11:42 AM on January 14, 2018
Response by poster: I'm really appreciating this Ask. It is helping me clarify my thoughts about this a lot.
posted by hippybear at 12:03 PM on January 14, 2018 [4 favorites]
posted by hippybear at 12:03 PM on January 14, 2018 [4 favorites]
Best answer: If nurses are hearing you say "torso" and writing down "abdominal," I would try correcting to "lower chest" if that is even halfway accurate. It doesn't sound like a heart thing, not that I am a doctor or would know, but this might upgrade the seriousness and concern with which you are treated.
And for the brief summary you give in the first five minutes you see someone, I would stress the fact that you can't walk when this happens. You're experiencing repeated episodes of lost coordination, ability to stand or hold onto object with your hands -- any loss of balance or dizziness or visual changes? If the mental fog ever felt like you were going to pass out, say that too.
I would hope that they already ran a basic blood panel and will get the results back to you soon. If all this happened to me I think I would tell a doctor it felt like some kind of seizure -- that is not my amateur diagnosis and probably not accurate, but as a layperson that's how I would describe it, and follow up with all the details when questioned. if I wanted to get sent to a neurologist.
posted by queenofbithynia at 12:35 PM on January 14, 2018 [9 favorites]
And for the brief summary you give in the first five minutes you see someone, I would stress the fact that you can't walk when this happens. You're experiencing repeated episodes of lost coordination, ability to stand or hold onto object with your hands -- any loss of balance or dizziness or visual changes? If the mental fog ever felt like you were going to pass out, say that too.
I would hope that they already ran a basic blood panel and will get the results back to you soon. If all this happened to me I think I would tell a doctor it felt like some kind of seizure -- that is not my amateur diagnosis and probably not accurate, but as a layperson that's how I would describe it, and follow up with all the details when questioned. if I wanted to get sent to a neurologist.
posted by queenofbithynia at 12:35 PM on January 14, 2018 [9 favorites]
Man, this does not sound like a panic attack to me, especially because it's happening out of a dead sleep. If I were you, though, I would naturally feel panicky from the odd sensations that you're experiencing. It seems to me the cause and effect likely goes in that direction, not the opposite. You describe this keeping you from moving properly or thinking clearly. What you describe is significant interference with completing activities of daily living—not being able to work or eat at times when this is happening is kind of a big deal. The first thoughts I have are something neurological, cardiac, or endocrine—potentially serious issue with your wiring, in other words. One phrase that could apply to what you're experiencing is "ataxia and tremors." Ataxia is the word for not being able to coordinate your movements, such as your legs nearly giving way under you or not moving properly when you try to walk.
I was so disoriented in my own house one day last week I was standing in the hallway wondering where my bathroom was.
This is beyond mental fog. I probably wouldn't use that phrase to describe this. I'd use exactly your later word for it: disorientation, at times to the point of being unable to orient yourself within your own house. Don't let them send you home on Tuesday without a plan for follow-up and a referral to a specialist for a more detailed workup. And let us know how it goes, if you feel comfortable doing so! I hope they can figure it out.
posted by limeonaire at 2:28 PM on January 14, 2018 [9 favorites]
I was so disoriented in my own house one day last week I was standing in the hallway wondering where my bathroom was.
This is beyond mental fog. I probably wouldn't use that phrase to describe this. I'd use exactly your later word for it: disorientation, at times to the point of being unable to orient yourself within your own house. Don't let them send you home on Tuesday without a plan for follow-up and a referral to a specialist for a more detailed workup. And let us know how it goes, if you feel comfortable doing so! I hope they can figure it out.
posted by limeonaire at 2:28 PM on January 14, 2018 [9 favorites]
Best answer: I would use exactly the words you've described here. Internal vibration, shakiness, disorientation. If possible, demonstrating, or getting a video of what these movements look like, can be invaluable.
You may find the website NeuroSymptoms.org helpful. It's a patient-facing site run by a neurologist who specializes in functional disorders. Note: I have no idea if you have a functional disorder. Just that some of the language used to describe functional neurology matches with some of the language you use here.
I'd caution against phrases like ataxia -- that has an extremely specific meaning in medicine (especially in neurology) and some medical professionals get suspicious when non-professionals use jargon.
posted by basalganglia at 2:44 PM on January 14, 2018 [1 favorite]
You may find the website NeuroSymptoms.org helpful. It's a patient-facing site run by a neurologist who specializes in functional disorders. Note: I have no idea if you have a functional disorder. Just that some of the language used to describe functional neurology matches with some of the language you use here.
I'd caution against phrases like ataxia -- that has an extremely specific meaning in medicine (especially in neurology) and some medical professionals get suspicious when non-professionals use jargon.
posted by basalganglia at 2:44 PM on January 14, 2018 [1 favorite]
If your insulin system/pancreas is out of whack it is possible to be hypoglycemic even if you are eating well. An endocrinologist might be a good idea.
posted by SLC Mom at 3:08 PM on January 14, 2018 [2 favorites]
posted by SLC Mom at 3:08 PM on January 14, 2018 [2 favorites]
It sounds like some kind of seizure to me. Since you say it doesn't seem food related I'd want to start with a neurologist.
posted by bleep at 3:36 PM on January 14, 2018 [1 favorite]
posted by bleep at 3:36 PM on January 14, 2018 [1 favorite]
Best answer: I'd suggest getting an appointment with a neurologist who specializes in movement disorders, because s/he will have a lot more expertise in identifying tremors than a common or garden variety neurologist. If your profile location is current, this guy might be relatively close.
posted by timeo danaos at 3:37 PM on January 14, 2018
posted by timeo danaos at 3:37 PM on January 14, 2018
If you think it's unlikely to be a result of panic, make sure to guard against some doctors'/nurses' tendency to fit things into the boxes they're most familiar with, and to dismiss badly-understood things as psychosomatic. If they start to mention panic, push back against that very clearly and explain your state of mind before these episodes begin.
When describing the location of the vibration, pointing or naming the ribs it starts near (if relevant) might help.
posted by trig at 7:07 PM on January 14, 2018 [2 favorites]
When describing the location of the vibration, pointing or naming the ribs it starts near (if relevant) might help.
posted by trig at 7:07 PM on January 14, 2018 [2 favorites]
Best answer: Certainly doesn't sound like a panic attack to me. Not if it wakes you out of a sound sleep!
I'm here to tell you keep after them till they get a definitive diagnosis. For several months now, my husband has complained (to me) about 'feeling weird" but of course wouldn't go to a doctor. Christmas dinner, he had a full-blown seizure that resulted in a Christmas ambulance ride for us both. Whee. Not. Now we're playing games with MRIs and neurology exams.
2017, you sucked.
Mental fog, shakiness, disorientation? You do NOT want to be driving when this happens, or even traveling alone on a bus or subway. Get thee hence to a doctor that will respond appropriately.
posted by BlueHorse at 7:30 PM on January 14, 2018 [3 favorites]
I'm here to tell you keep after them till they get a definitive diagnosis. For several months now, my husband has complained (to me) about 'feeling weird" but of course wouldn't go to a doctor. Christmas dinner, he had a full-blown seizure that resulted in a Christmas ambulance ride for us both. Whee. Not. Now we're playing games with MRIs and neurology exams.
2017, you sucked.
Mental fog, shakiness, disorientation? You do NOT want to be driving when this happens, or even traveling alone on a bus or subway. Get thee hence to a doctor that will respond appropriately.
posted by BlueHorse at 7:30 PM on January 14, 2018 [3 favorites]
Best answer: This may not be the same cause at all, but I had episodes like you're describing (only I often felt chilled at the end, rather than hot) before my Hashimoto's thyroiditis diagnosis. Please request that a full thyroid panel (with antibodies) be performed. I'd ask for anemia and b-12 deficiency screenings, too.
posted by Iris Gambol at 8:13 PM on January 14, 2018 [1 favorite]
posted by Iris Gambol at 8:13 PM on January 14, 2018 [1 favorite]
If the vibration feels similar to a fish flopping around in your chest, have an evaluation for atrial fibrillation.
posted by quince at 9:43 PM on January 14, 2018
posted by quince at 9:43 PM on January 14, 2018
Response by poster: It feels more like a humming or a vibration, like (as suggested above) an electric toothbrush. But I'm making list of all the suggestions here to talk to my doctor about, because I'm entirely mystified. This experience is bizarre.
posted by hippybear at 10:14 PM on January 14, 2018
posted by hippybear at 10:14 PM on January 14, 2018
It doesn't sound at all like a panic attack to me either, for what its worth, though I know they manifest differently with different people and at different times.
Edit: for me, regardless of the physical symptoms panic attacks are accompanied by a heightened alertness; I've never wondered where I was during a panic attack.
posted by thereader at 10:52 AM on January 15, 2018
Edit: for me, regardless of the physical symptoms panic attacks are accompanied by a heightened alertness; I've never wondered where I was during a panic attack.
posted by thereader at 10:52 AM on January 15, 2018
Not going to attempt a diagnosis, but in the UK if you were looking for a term to describe this I would say “funny turn”. That will set your GP off down a totally different (and hopefully more fruitful) diagnostic path than your nurse’s “abdominal pain”. I’m not sure if it’s the right term in the US.
(And no it shouldn’t make any difference what you call these episodes, but once they are labelled “abdominal pains” in your notes it will take a huge amount of effort to turn the ship around and start off down the right investigatory path).
posted by tinkletown at 2:28 PM on January 15, 2018 [2 favorites]
(And no it shouldn’t make any difference what you call these episodes, but once they are labelled “abdominal pains” in your notes it will take a huge amount of effort to turn the ship around and start off down the right investigatory path).
posted by tinkletown at 2:28 PM on January 15, 2018 [2 favorites]
When I read your description, I also thought of a low blood sugar event. Please, next time this happens drink some juice or eat some candy immediately. If that helps, you'll have learned your blood sugar is involved.
Also, could you go to the ER in the middle of one of these episodes? It certainly sounds serious enough to merit that.
posted by kitcat at 4:15 PM on January 15, 2018 [1 favorite]
Also, could you go to the ER in the middle of one of these episodes? It certainly sounds serious enough to merit that.
posted by kitcat at 4:15 PM on January 15, 2018 [1 favorite]
Best answer: I've had that vibrator feeling and in my case it was neurological- B12 deficency specifically. But it didn't come and go so much as I just got sicker and sicker over about a year. Anyway just a note- you are not the only person to feel this.
posted by fshgrl at 4:50 PM on January 15, 2018 [1 favorite]
posted by fshgrl at 4:50 PM on January 15, 2018 [1 favorite]
Response by poster: Thank all of you for your input. I really felt more prepared to describe my symptoms when I went in today. Of course, today is one of the days when I'm not feeling bad, but oh well. Apparently the doctors on duty had a little meeting and nobody had any clue what is wrong with me. They took a bunch of blood and the thyroid thing is something they are going to test for. I don't know what all else they are testing for.
Apparently they're going to try to get me in to a neurologist if the blood work doesn't reveal anything.
Anyway, I will keep posting to this thread as I find out what is going on.
Best answers are marked for things that I actually talked to the doctor about. But every answer here has been helpful for me this morning.
Thanks so much again!
posted by hippybear at 10:10 AM on January 16, 2018 [8 favorites]
Apparently they're going to try to get me in to a neurologist if the blood work doesn't reveal anything.
Anyway, I will keep posting to this thread as I find out what is going on.
Best answers are marked for things that I actually talked to the doctor about. But every answer here has been helpful for me this morning.
Thanks so much again!
posted by hippybear at 10:10 AM on January 16, 2018 [8 favorites]
Response by poster: Blood tests all came back normal. Trying to get an appointment with a neurologist now, but connecting with their new patient intake desk is proving to be oddly difficult. Will call yet again tomorrow.
posted by hippybear at 7:45 PM on January 22, 2018
posted by hippybear at 7:45 PM on January 22, 2018
I just went through this with another specialist, all my calls went right to voicemail. I had to ask my doctors receptionist to make contact for me and everything got set up right away. It's part of their job to help with this.
posted by bleep at 11:04 PM on January 22, 2018 [1 favorite]
posted by bleep at 11:04 PM on January 22, 2018 [1 favorite]
Response by poster: So, just a little update. I'd been trying to get an appointment with a neurologist and when I finally talked to someone at the new patient telephone prompt they told me that it might take a months to get an initial appointment, but that when I have a bad day of symptoms again I should go to the emergency room.
So, that happened on Monday. I spent 7 hours in the emergency room, had an EKG and MRIs and blood tests and all kinds of things...
I was supposed to be at a convention in Dallas this weekend but I cancelled the trip and spent Thursday and Friday working the health care network and managed to get my emergency room records to both my local health care manager and the neurology office.
Somehow those medical records convinced the neurology office to get me an appointment for (surprisingly) Monday morning, and also I have an appointment with my local person on Wednesday.
It sucks that it had to get to emergency room levels to get any attention for this, but it's finally moving forward in a way that feels like it might yield something.
I've decided I'm not taking off my emergency room wristband until I have a diagnosis. I need to get this solved.
posted by hippybear at 6:52 AM on February 10, 2018 [5 favorites]
So, that happened on Monday. I spent 7 hours in the emergency room, had an EKG and MRIs and blood tests and all kinds of things...
I was supposed to be at a convention in Dallas this weekend but I cancelled the trip and spent Thursday and Friday working the health care network and managed to get my emergency room records to both my local health care manager and the neurology office.
Somehow those medical records convinced the neurology office to get me an appointment for (surprisingly) Monday morning, and also I have an appointment with my local person on Wednesday.
It sucks that it had to get to emergency room levels to get any attention for this, but it's finally moving forward in a way that feels like it might yield something.
I've decided I'm not taking off my emergency room wristband until I have a diagnosis. I need to get this solved.
posted by hippybear at 6:52 AM on February 10, 2018 [5 favorites]
This thread is closed to new comments.
posted by The Underpants Monster at 9:53 AM on January 14, 2018 [1 favorite]