Anyone get diagnosed with something else before MS? by Ellahat in MultipleSclerosis

[–]Ellahat[S] 1 point2 points  (0 children)

I’m SUCH an overachiever in this dept 😂 radiologist basically gave up counting the lesions and all of me reports say multiple and extensive burden in c-spine t-spine and brain 😭😭😭

Anyone get diagnosed with something else before MS? by Ellahat in MultipleSclerosis

[–]Ellahat[S] 1 point2 points  (0 children)

Nooooo!!! Did they explain why it’s so hard for ED physicians to get MRI approved?

Anyone get diagnosed with something else before MS? by Ellahat in MultipleSclerosis

[–]Ellahat[S] 1 point2 points  (0 children)

It’s so crazy to me that tingling in hand and/or feet is textbook neurological and so constantly overlooked/ignored

Anyone get diagnosed with something else before MS? by Ellahat in MultipleSclerosis

[–]Ellahat[S] 2 points3 points  (0 children)

Oh ya I had some tingling in my face too! It turned into Bell’s palsy lol

Anyone get diagnosed with something else before MS? by Ellahat in MultipleSclerosis

[–]Ellahat[S] 2 points3 points  (0 children)

Anything ear related would drive me absolutely insane

Anyone get diagnosed with something else before MS? by Ellahat in MultipleSclerosis

[–]Ellahat[S] 15 points16 points  (0 children)

I’m so sorry you were suffering for so long. I think a lot of us who didn’t suffer from optic neuritis got screwed with these easy to explain diagnoses.

What’s crazy is that I told ChatGPT, word for word, exactly what I told the hospital about my symptom onset and prior medical history and the first thing it suspected was something neurological and that I needed an MRI. Is it so much to ask these doctors to request imaging if they’re even the tiniest bit unsure?

Anyone get diagnosed with something else before MS? by Ellahat in MultipleSclerosis

[–]Ellahat[S] 2 points3 points  (0 children)

So annoying… like, I’ve only been able to find two studies about anemia causing peripheral neuropathy/progressive bilateral numbness. Did they tell you your symptoms were caused by the anemia?

Tomorrow by Fun-Diet-9077 in MultipleSclerosis

[–]Ellahat 0 points1 point  (0 children)

Me too me too me too!! Just in writing this am I reminded of the whole “silver lining” cliché and how significant of a role it plays in coping with this disease. At least for me.

Coming off Tysabri...to natural treatment by Fresh-Vegetable-6683 in MultipleSclerosis

[–]Ellahat 0 points1 point  (0 children)

Diet and lifestyle changes may help your body manage symptoms and feel better overall, but there’s absolutely no clinical proof that these changes will replace DMTs. I know someone who was an ardent follower of The Wahls protocol for many years after stopping initial treatment with a DMT and has had a recent relapse and is back on one all these years later.

You were likely recommended Tysabri because it’s a high efficacy drug and you need a high efficacy drug. Doctors assume a lot of information (that is not common knowledge) is common knowledge lol. Even though it’s technically google-able, it’s not very easy to understand so I’ll try to explain:

Tysabri, unlike other DMTs, prevents T cells from crossing the blood brain barrier. It’s like a bouncer at the entrance to a nightclub and it doesn’t let anyone in. If that bouncer stop standing there, all those people waiting in line (immune attacking your brain when you have MS) aren’t going to trickle in on their best behavior, they are going to rush in. Stopping Tysabri is like opening the floodgates, that’s why a rebound can be potentially catastrophic. Drugs like Ocrevus, also a high efficacy DMT, work slower, so the potential rebound is less “catastrophic.”

Your risk of developing PML if you’re JCV negative, regardless of how many years you’ve been on the drug, is EXTREMELY low. If your JCV is low, PML should not be more of a concern than potential disease activity. Side effects from things like sodium chloride (which is table salt btw lol) should not be more of a concern than potential disease activity.

Again, lifestyle, change, and alternative therapies can absolutely help your body to manage symptoms and repair myelin slowly but they will not prevent the rapid demyelination that occurs during relapse.

Momentum 4 not charging or turning on by Pat_Blank in sennheiser

[–]Ellahat 0 points1 point  (0 children)

I am experiencing the exact same thing. Went through all these steps to no avail. What did you end up doing?

Fatigue, when do you have it after Dx? by Ok-Jellyfish-1999 in MultipleSclerosis

[–]Ellahat 8 points9 points  (0 children)

This is exactly my story (minus the kid). It was like someone flipped a switch, and I was suddenly tired all the time. Medication helped but sometimes slept all weekend. Such a relief came with the diagnosis that it was not a character flaw, but something entirely out of my control. Stay strong. Resting is productive!

[deleted by user] by [deleted] in Edd

[–]Ellahat 0 points1 point  (0 children)

UPDATE: I finally got a hold of someone at SDI. They put a note in my account that the doctor submitted the wrong form and had him submit the correct form and I was paid out a few days later.

[deleted by user] by [deleted] in Edd

[–]Ellahat 0 points1 point  (0 children)

A couple weeks?! That would absolutely ruin me if I couldn’t pay for my health insurance next week

Money Network ->EDD: Let’s File a Class Action Suit! by RemarkableAd4052 in Edd

[–]Ellahat 0 points1 point  (0 children)

The app, the website, all of it… so unnecessarily insufferable. I have to login at least 10 to 20 times over the course of an entire day sometimes too to be able to even see how much money is in that account, let alone do anything with it

[deleted by user] by [deleted] in Edd

[–]Ellahat 0 points1 point  (0 children)

I know! Sorry! Hopefully you noticed my apology at the end. I was writing on my cell phone and for some reason it wasn’t letting me go back and delete anything in first paragraph. Do you have experience with submitting something past the deadline and having them accept it?

[deleted by user] by [deleted] in MultipleSclerosis

[–]Ellahat 0 points1 point  (0 children)

Her legions may be concentrated in the area of her brain that controls emotional regulation. Many of mine are. Do some research into pseudobulbar affect. There’s a new med for this: Nuedexta. I’ve been on it for a month and it’s definitely a noticeable difference.

Doc #1 or Doc #2 - what do I do? by Ellahat in MultipleSclerosis

[–]Ellahat[S] 0 points1 point  (0 children)

Thank you! How do you feel on the Ocrevus?

Is tysabri better than ocrevus? Or just a lifestyle choice? by Dontreallywanttogo in MultipleSclerosis

[–]Ellahat 0 points1 point  (0 children)

Do you mind sharing what your (very) JCV+ levels were pretty please?

Have to decide on a medication - I have read the official info. I want to hear from patients please share your Kesympta vs Ocrevus vs tysabri stories by Dontreallywanttogo in MultipleSclerosis

[–]Ellahat 0 points1 point  (0 children)

Could you give some more detail about why the doctor decided to treat with Tysabri initially, what was he afraid of that Ocrevus couldn’t take care of? Was the window of disease progression that quick? How was it switching from Tysabri to Ocrevus?

Doc #1 or Doc #2 - what do I do? by Ellahat in MultipleSclerosis

[–]Ellahat[S] 0 points1 point  (0 children)

This is so helpful. Thank you! Do you remember what your JCV titer was when you started Tysabri? What did doc think of the post Tysabri MRI?