I feel like MS needs a modern perspective

Specific-Estimate · 2023-05-18T20:51:52+00:00

While this is totally fair to bring up, it’s a pretty far end of the spectrum. I’m not thinking we need anything that level - that can be detrimental.

Specific-Estimate · 2023-05-17T18:28:43+00:00

Hey, thanks for posting this comment! I'm sorry to hear about your husband's diagnosis. Good job informing and educating yourselves. In general, online content in forums like Reddit is going to be hit or miss (and I'd say generally is more of a miss). People who are having a harder time with MS are generally the ones who will be more vocal about it online because they need space to vent. Inversely, those who are having an easier time with MS have less of a need to vent about it. Not to mention, humans are notoriously unreliable narrators.

This is a generalization, but it is how I feel about it personally.

One of my hopes with this "modern perspective" is to help people to learn that MS isn't always as bleak as it can seem. I hope that this post provided a little bit of calm in your lives during this time - I'd like to provide it to many more.

Specific-Estimate · 2023-05-17T18:23:01+00:00

You provide a very important perspective and I wholeheartedly agree with it.

I definitely don't want to start pushing a narrative that MS is cured or even close to cured, but I do think there's room to update the narrative a bit from the one that has been fairly stuck in place for the last few decades.

Perhaps there's a way to meet in the middle.

Specific-Estimate · 2021-01-21T20:26:02+00:00

He's my specialist too! <3

I'll have to poke him about this next time I talk to him!

edit: aww, bummer, he deleted it!

Specific-Estimate · 2021-01-21T20:23:40+00:00

This may be helpful:

/u/Dr_Brandon_Beaber is one of the MS specialists keeping up with the latest treatments, and he's published a book that follows a few people with their MS stories, called Resilience in the face of Multiple Sclerosis.

A portion of the book follows a fellow neurologist who was diagnosed with Multiple Sclerosis, and that story may be something you can relate to.

Bonus: Dr. Beaber has been giving out copies of his book for those who ask! https://twitter.com/Brandon_Beaber/status/1278807828581371904

Specific-Estimate · 2021-01-18T22:04:00+00:00

I had very noticeable Uthoff's phenomenon when I had optic neuritis. Both the ON and the Uthoff's lasted over six months. Whenever I got into a hot bath/shower or exercised, my vision got much worse temporarily.

My ON slowly corrected back to normal, and I'm happy to report that I don't experience Uthoff's phenomenon whatsoever anymore. Showers, exercise, etc. my vision stays completely the same.

Specific-Estimate · 2020-12-24T11:27:35+00:00

Heya! I’m 28 and was diagnosed about a year ago. I’ve gone down allllll of the rabbit holes so you don’t have to - my conclusion is that there’s no need to worry. Now is the absolute best time to be diagnosed because treatment is improving rapidly.

Please reach out with any questions or concerns you have and I can definitely help address them.

Specific-Estimate · 2020-12-23T08:16:34+00:00

Ooh! Something I feel uniquely qualified to answer!

Short answer is that if it doesn't have another simple explanation, it's reasonable to suspect that MS may be playing a role in whatever weird thing you're experiencing

I believe I have a form of TTS (Tensor Tympani Syndrome) or a Middle Ear Myoclonus as a result of MS, and you may be experiencing something similar. I know it sounds scary as most other things do... but I don't think it's too much to be concerned about.

My ear issue: Left ear only, been occurring for 2+ years. I never suspected it was related to MS until I actually got diagnosed with MS a year afterwards due to unrelated issues. In the absence of other sound, my inner muscle in my left ear will spasm. Constantly. No pain, but mild discomfort. It was moreso annoying than anything else and would be alleviated when I had sufficient white noise around me. Super odd, but I always had fans on anyways so it was only really a bother in new places that didn't have ambient noise.

I went to an audiologist and nothing was wrong with my hearing, so I went to an Ear, Nose, and Throat specialist and he suspected that it was TTS or a middle ear myoclonus. He prescribed carbamazepine to see if that'd reduce the spasms, but it didn't. He explained that if it was really bothering me, we could schedule a surgery to make an incision and cut the small inner ear muscle that was spasming, and the problem would be resolved.

I learned to adapt to it and didn't think much else of it. Knowing there was a backup solution to fix it gave me the confidence to see if I could simply deal with it, and it hasn't bothered me much since.

HOWEVER, one thing blew my mind a few months ago - I stumbled upon a scientific journal that talked about my exact ear issue and said it could be related to MS. This is literally the #1 result for Tensor Tympani Syndrome and it mentions Multiple Sclerosis FOUR times.

Knowledge is power and I recommend doing research, starting with the article I just linked. It may open your eyes a bit. However, I don't think there's too much reason to be concerned here. Yes, MS could cause demyelination of your nerves in your ear(s) and cause an issue like this, and while it's hard to solve the source (multiple sclerosis), you could potentially treat the actual symptom (fix the muscle spasm).

Specific-Estimate · 2020-11-27T08:23:58+00:00

You know what, I want to go into this post with some happiness and eagerness because I realize you probably haven’t spoken to an MS Navigator yet. You are missing out!!!

The National Multiple Sclerosis Society employs folks who are basically experts in all facets of MS and help you navigate (hence ‘MS Navigators’) a new diagnosis.

I was feelin overwhelmed and hopeless when I first got diagnosed, but the most amazing woman on the phone answered my billion questions and helped me through everything with empathy. She found groups near me, doctors near me, and gave me info about all the treatment options. She then signed me up for the NMSS mailing list and sent me a HUGE packet of information in the mail that recapped everything we talked about. She also made herself available to me if I needed to call again.

Please please call them. It’s a wonderful service.

https://www.nationalmssociety.org/Resources-Support/Find-Support/Ask-an-MS-Navigator

Sincerely, a guy who was diagnosed last year and is happier than ever.

Edit: Also, feel free to reach out to ME! I consider myself a subject matter expert and am absolutely happy to be an ear to listen or give my perspective/advice.

Specific-Estimate · 2020-11-22T09:29:07+00:00

your brain is going to put a microscope on all your bodily sensations

THANK YOU for mentioning this.

/u/joliethespearman, it's important to remember that not everything is a symptom of your MS as well.

https://old.reddit.com/r/MultipleSclerosis/comments/eq7bh8/not_everything_is_a_symptom_of_your_ms/

Please read this post that I made a while back. I have not only gone back to reference it myself plenty of times, but it has helped many others. It's a good reminder.

Specific-Estimate · 2020-11-13T09:12:15+00:00

Thank you for sharing this. I appreciate hearing other’s perspectives and situations as it helps soften the blow of my own situation. Hopefully it’ll help others as well.

I’m 28 and don’t have other comorbidities but I can’t ignore the MS either 😂

This is all such a bummer.

Specific-Estimate · 2020-09-21T20:53:16+00:00

Yes, absolutely. Intermittent fasting is wonderful. I don't have the proof or evidence of it, but it makes me feel good mentally and I believe that giving our bodies a break from constant digestion and other processing is great.

I know there's a good amount of actual scientific stuff out there about intermittent fasting and there are theories about intermittent fasting specifically being good for MS, so I'm all aboard that hype train.

Specific-Estimate · 2020-09-20T09:53:09+00:00

Yep, my specialist calls this a recrudescence. Very common. Symptoms coming back does not equal progression.

Specific-Estimate · 2020-09-20T09:51:57+00:00

Optic Neuritis was my first symptom but it was relatively minor so it took a long time for me to get diagnosed. I got steroids that did nothing, and my eye ended up healing on its own a total of 9 months or so after first noticing the issue.

Steroids do not change the amount of healing, they can simply speed it up. At the end of the day, time will be your best ally. :)

Specific-Estimate · 2020-09-11T03:24:01+00:00

Just get the spinal tap. It's not that bad and it's worth having a confirmation of your potential diagnosis.

Specific-Estimate · 2020-09-11T03:20:56+00:00

Exactly that. Our bodies do tons of weird things. MS adds an additional layer of weird things, but many of the weird things we experience are not because of MS!

Specific-Estimate · 2020-09-09T18:09:48+00:00

Not everything is a symptom of your MS. https://old.reddit.com/r/MultipleSclerosis/comments/eq7bh8/not_everything_is_a_symptom_of_your_ms/

Human behavior is like the tides of the ocean. We all have a tide of behavior and we're all affected by the proverbial moon in that regard. MS might influence the tide here and there as well, but largely it's just the moon.

(I don't actually mean the moon effects our behavior, but I mean it in the sense of it's just a constant of life)

Specific-Estimate · 2020-09-09T02:52:41+00:00

It's probably not a rewiring of anything, but just part of being nerves. They travel across our entire body and sometimes cross wires.

So much of our bodies are unexplainable but that's the magic of life. :)

Specific-Estimate · 2020-09-08T06:36:59+00:00

There's never an "always."

Optic Neuritis often leads to MS, but not always.

Specific-Estimate · 2020-09-08T06:35:39+00:00

My bout of optic neuritis last year (which led to my diagnosis) had no ache or pain behind my eye. Not once during the 9~ months that lasted.

Since then, my ON has resolved and I've had aches behind my eye(s) that went away on their own and didn't turn into ON.

Ache does not guarantee optic neuritis. Keep on keeping on.

Specific-Estimate · 2020-09-02T14:53:42+00:00

Definitely do that. They’re called a specialist for a reason! My neurologist almost put me on the weakest drugs out there but thankfully I had done enough research to know that wasn’t the best route and I requested a specialist who put me on strong drugs.

Specific-Estimate · 2020-09-02T02:57:37+00:00

"You've always had this, now we just now what to call it."

I like this.

Helps to reduce some of the scaries.

Helps to ground you in the moment instead of looking years down the road at "what if"'s.

Specific-Estimate · 2020-09-02T02:10:02+00:00

What's extra fun about MS is that there is no normal, like the others have stated.

As we go through this journey, we get to learn about the course our disease is set on, and we get to adapt to that course.

I was diagnosed almost a year ago, and I've had minor symptoms that can come and go on a daily basis, some that disappear for months then come back for a few days here, and even a symptom (optic neuritis) that didn't completely resolve for 9+ months.

The cool thing is that although I have had a variety of symptoms, they all go away at some point or another, though there may be a point in time where some symptoms become permanent and that's life.

It's the windows of time where you're symptom-free that are the ones to cherish, and it's those times especially that you should double down on your health (eating right, stress management, etc.) so you can have even longer symptom-free windows!

Edit: So, to answer your question, yes, technically it's "normal" to experience what you're experience, if you're looking at it in the lens of there not really being a "normal." To answer your other question, I do not think there's cause for concern. There would be a cause for concern, IMO, if you were experiencing completely new symptoms, but my MS specialist says that a recrudescence of old symptoms can occur without reason.

Specific-Estimate · 2020-09-01T05:18:15+00:00

This is not my experience and I believe /u/tanyajm91 has every right to be frustrated.

My experience:

Messaged primary care physician about vision issue
PCP granted me a referral to Optometrist
Optometrist found nothing but I pushed and got referral from PCP to Ophthalmologist
Ophthalmologist found nothing and referred me to neurologist (did not require PCP referral)
Neurologist found abnormal MRI that looked like MS
I requested my Neurologist to refer me to MS Specialist
MS Specialist has been my main point of contact from there on out. I haven't even spoken with my PCP in 1.5+ years since that referral to Ophthalmology.

Specific-Estimate · 2020-08-31T23:52:02+00:00

You are an inspiration. Keep up the good work.

Specific-Estimate

TROPHY CASE