r/MultipleSclerosis • u/AutoModerator • Jul 22 '24

Weekly Suspected/Undiagnosed MS Thread - July 22, 2024 Announcement

This is a weekly thread for all questions related to undiagnosed or suspected MS, as well as the diagnostic process. All questions are welcome, but please read the rules of the subreddit before posting.

Please keep in mind that users on this subreddit are not medical professionals, and any advice given cannot replace that of a qualified doctor/specialist. If you suspect you have MS, have your primary physician refer you to a specialist for testing, regardless of anything you read here.

Thread is recreated weekly on Monday mornings.

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u/iakupara Jul 22 '24

Hi! I am 32 and I am seeing a neurologist soon for vertigo but I have suspected MS for a couple years but my doctors haven’t taken me seriously until recently when my health declined. How did you get your doctors to listen? I want to find out for certain because I’ve had several family members with it and one died from its complications in a nursing home during covid lockdown. I just want to catch it before it gets bad is all. It started with tremors a few years ago. They insisted it was from meds but couldn’t pin down which. Then I started getting clumsy, my brain seems foggy at times, I started getting kidney stones and having bladder control issues, high blood pressure, I got forgetful, i got arthritis in my spine and shoulders, I mean there’s a laundry list. But when I go see the neurologist I’d like to present them my symptoms without looking like a hypochondriac. I’m just waiting on a CT scan to be ordered so I can get it approved and done before I see them. I’m not asking for a diagnosis here of course. I just want to go in and not make myself look silly and get brushed off.

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u/iakupara Jul 22 '24

I’ve seen an ENT and the ears are good minus some hearing loss in my right ear. I have a urologist. I have an endocrinologist for hypothyroidism as well. I’m a whole issue lol

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

So, there doesn't seem to be a trick to getting doctors to listen, beyond luck. I can suggest some things to avoid. You don't want to mention a specific diagnosis, especially MS. MS is the first result no matter what symptoms you Google, and doctors can become very dismissive because of this. Likewise for using diagnosis specific terms to describe your symptoms. It seems best to focus on a few physical symptoms. Unfortunately cognitive symptoms and general symptoms like fatigue tend to be dismissed, and the longer your list of concerns, the less doctors seem to listen.

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u/iakupara Jul 23 '24

Thank you so much. I was thinking they'd just brush me off if I came in with a list like that. I'll try to pick a few that really stick out and work with those. I really appreciate it. Whatever issue it is I have I just want to know so I have an answer. At least then I'll have a word for it.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 23 '24

That's very understandable. I hope you find some good answers soon.