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How do I ask my neuro to run tests to check for MS without sounding like a hypochondriac "Dr. Google" patient?

I have a neurologist whom I see for chronic migraines. However, since around 2014, I have been experiencing what I can only describe as brief “episodes” of random, unrelated symptoms.

In 2014, I had my first episode of numbness and tingling in both hands and fingers. I was able to get an EMG done while the symptoms were still occurring and they said I had carpal tunnel syndrome. I declined surgery and opted to wear a brace on the side that was worse, but I admit I was horribly noncompliant with wearing the thing. Even so, the numbness and tingling completely vanished about 2 months after initial onset.

In 2017, I started seeing flashing lights in one of my eyes. I was rushed in to the ophthalmologist since this is one of the first signs of retinal detachment, which is a medical emergency. The initial exam revealed nothing out of the ordinary, other than what the doctor described as “possible mild inflammation of the retina” and I was asked to come back in a month. A month later, I came back, still with the flashing lights. At that point I was scheduled for a fluorescein angiography, where they inject a contrast dye and look at the inside of my eye through this little viewport machine. By the time I finally had this test done, it was nearly 3 months into the flashing light episode and the lights were nearly gone, whereas before they had been nearly constant. The neuro-retina specialist told me there was “mild inflammation of the optic nerve” and then proceeded to diagnose me with silent migraines with aura and prescibed me with Topimax. I completely disagreed since auras usually only last 5-60 minutes according to medical literature and I found it highly unlikely that the 24/7 lights I’d been seeing for the previous 3 months could have been a silent migraine.

In 2018, for a period of 2-3 months, I experienced a strange tingling pain in my feet. I did not see a GP for this as my previous experience with the eye doctor made me worry that I wouldn’t be taken seriously. It eventually (and abruptly) went away.

In 2019 I experienced my second episode of numbness and tingling in my hands. About a month in I finally made an appointment with my GP. She referred me for another EMG, but due to a large waitlist, I was not seen until about 5 or 6 weeks later, by which point, the numbness and tingling had completely disappeared. The EMG was negative and I felt deep down that my GP must think I’m a hypochondriac at this point, for getting a pointless test done that came back completely negative.

This past year, I have been struggling a little with irregular, intermittent episodes of urinary incontinence. I’m usually able to hold it in just fine in situations where I am unable to get to a bathroom for several hours, but every once in a while, whether it has been 8 hours or 2 hours, I will have an incontinence accident. Most are minor, just a change of underwear is needed. On 2 or 3 occasions, I have needed a complete change of bottoms and a mop. Very embarrassing, but not something I have brought up to my doctors.

I started seeing the neuro only a couple months ago for my migraines (I have never had any MRIs done, she has just started me on sumatriptan to take at the onset of a migraine and these are doing just fine in managing them). This is it though. This is the doctor I would talk to about signs of MS and possible testing, who would be much more familiar with it than a GP.

However…I worry that putting all these unrelated symptoms out there as a possibly connected issue will just make me look like I’m trying to force a bunch of random things into a diagnosis. I’m worried she will think I’m acting like a hypochondriac and a “Dr. Google” who is convinced I have a terrible disease. I am a medical professional (a nurse) but obviously do not have the advanced medical training that a doctor has and do not want to sound like I know better than she does. I know the likelihood of me actually having MS is pretty low, but every time I have some weird symptom that lasts longer than a week or so and I look it up, time and time again, MS falls on the list of possible causes. Nothing else shows up so frequently, so it has me feeling paranoid and feeling like I’d rather just get testing done and have it come back negative than get nothing done and find out years down the road that I do have MS and should have started treatment a long time ago.

How have you navigated this issue? How have you overcome the anxiety of worrying about your neuro’s opinion of your mental well-being?

Hi, welcome. As you are already under a Neurologist you have a head start!

Do exactly what you’ve done here. List all the dates and symptoms, present it to the Neurologist and ask the question. This is your health and you are obviously concerned. Try and worry less about what your Neuro thinks and more about getting some answers. If it turns out to be nothing to worry about, you haven’t lost anything. If it turns out to be MS then you stand the best chance of starting treatment earlier.

Good luck :slight_smile:

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I agree with Eastendgirl, I had ramdom symptoms over 20 years and never connected the dots even though I had a few mri’s and saw different neurologists no one else made the connection either. I was just glad the symptoms cleared up, then when a private neurologist (without mri scans) mentioned ms I was floored but it made sense. Then a NHS neurologist (with scan results) discounted ms I was relieved and symptoms had gone so no more was done. Symptoms returned 18 months later and i thought my mind was playing tricks on me as the seed of ms had been planted - decided to get a result on way or another and it turns out now I have spms currently waiting treatment but it wont stop the progression.
So the morral of my story is dont wait, get tested get diagnosed as soon as you can and start treatment - dont worry about what others MAY think, its for your own peace of mind and its your health…hopfully it wont be ms.
Take care

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Thank you. I think I will print this out as a sort of diary and take it with me to my next appointment. I just don’t want to come off like I’m self-diagnosing or over-analyzing every little symptom.

So if I’ve read correctly about MS, a lot of times, symptoms come and go, right? Because I honestly do feel like I’m losing my mind sometimes and worry that I’m just being a hypochondriac. But I’m the kind of person who hates having to take pills, I put off going to the doctor as long as possible unless it’s causing a lot of discomfort, and I tend to not mention a lot of things. I feel like if I were a hypochondriac I wouldn’t be doing any of those things, I’d be driving my doctors up a wall. XD Since this is a newer doctor who doesn’t know me very well, though, I just have that worry in the back of my mind. I’m sure she sees patients every day convinced they’ve got a brain tumor or something, so I just don’t want to be another “oh god one of these” patients.

I had exactly the same issue as you - odd symptoms over the years which nobody (except me) had put together to reach a MS diagnosis. Mine came to a head when one day I woke up with double vision and a searing headache and I went to A&E. They kept me sitting there for 8 hours doing nothing until the doctor I was assigned just told me “We don’t do eyes here”. I swear he thought I’d just had a night on the tiles. I was astounded and broke down, not just with a senior nurse there who could do nothing without him. It took me being in floods of tears in the hospital car park on the telephone to my brother (who happened to be a consultant doctor) that a call from him made them get their act together and take me seriously. I finally ended up with them getting me an appointment the next day at the local eye hospital which led to them in turn requesting a MRI which led to my diagnosis. BUT only because my brother was pushy for me - I had always avoided asking him for any medical help but I was driven to it on that occasion.
I think what I would say to you is be a little pushy, but politely, and don’t be fobbed off. I was correct with my suspicions and actually very relieved when I was proven right … and you may be too … for your sake I hope it’s not MS but knowing either way for certain will always make you feel better.

J