Last reply 1 year ago
Do I have MS?

Hi everyone! I have suspected on and off for the past five years or so that I have MS. At that time, in 2012, I had a brain MRI done, and it only showed this:

(That’s a link to a google doc with two images.)

The doctors didn’t think they saw anything, although I do, when I look at those images. Anyway, I’ve had Lhermittes sign for years, probably since I was in my early twenties. (I’m forty now.) The Lhermittes sign gets worse every time I’m sick with a cold, the flu, etc. Other times, it disappears entirely.

Fatigue has been an issue for pretty much my entire life, since I was around 16 or 17 years old. I need around 9-11 hours of sleep at night, and that’s with my alertness aid (Provigil). Before Provigil, I required 11-13 hours of sleep. It’s not that I can’t wake up–I’ll either fall back to sleep or be a crabapple all day. Trust me on that!

I have ataxia sometimes–my hands get weak and close themselves.

I have a long list of mental illnesses for which I take five medications per day (including the Provigil). And I suspect the doctors don’t take me seriously because I’m a cute little mental patient. But both the fatigue and the Lhermittes sign predate my taking these medicines.

I have always had weak joints, which I realized when I was thirteen years old. I’d been taking ballet for ten years, but I was never allowed to move up to the next level. Doing a grand plie (it’s like a squat) without holding the bar, and then coming back up, was very hard for me, even at that age of peak physical fitness.

What does everyone think?

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1 year ago

Hi @untidyheidi has yuur MRI scan been viewed by a neurologist? They, really, are the only peoples who can decide if you have MS. When I had my first scan it was like a checkerboard with lesions all over. The neurologist was very confident I had MS but to be 100% I needed a lumbar puncture (spinal tap). From They then test the fluid that durrounds the spinal cord & brain which allows them to confirm multiple sclerosis. So without this there’s no guarantee either way I’m afraid. I hope that, in some way, helps…

1 year ago

You could have Lyme’s disease, a lot of the symptoms are very similar. A friend of ours wife has Lyme’s disease but they thought it was MS at first. She had a regular Lyme’s disease done and it came out alright, but her husband still thought she still had it. So they went to specialist in Lymes disease and went through a extensive tests and she did have it. She was treated for Lymes and quit progressing, she still has the damage caused by it but isn’t getting any worse. Potter

1 year ago

Hi – @untidyheidi – I took a look at your scans – although I don’t pretend to have the credentials to read them, lol. I will say, that the hyperintensity you see in that one image, is not the shape or location one would see an MS lesion. They can be about anywhere, of course – but the vast majority are in the peri-ventricular region, and ovoid in shape (the “Dawson fingers”). You would have to have at least 2 – (3 if no other definitive clinical sign), separated in time and space, (occuring at different times, in more than one location), to be thought MS. Do you have all of your images and analysis? Just curious if you have the radiologist’s comments on them.

I’m sorry you’re having these difficulties, however they do sound like traits you’ve had since becoming a teen – as opposed to a rather sudden appearing neurological symptom. May I ask why you had the MRI done? Was it a neurologist who gave you the results? And was the Provigil prescribed due to daytime sleepiness? I hope you find some answers. I’ve only asked you a bunch of questions! Blessings, Jan

1 year ago

Hi everyone and thanks for your insight! @bok2bjan, you’ve put my mind at ease about the thing on my brain. If you don’t think it’s MS, then I bet you’re right. The doctor didn’t seem concerned about it, either, although I didn’t discuss it with him. He simply looked over all the scans (the rest of which didn’t show anything) and said my brain was fine. He is a neuro doc, so I guess he’d know. I had to push for the MRI to be done. At the time, my ataxia–weakhandedness–was scaring me and really freaking me out. Now, I guess five years later, it just seems par for the course and it doesn’t faze me.

The Provigil was prescribed by my psychiatrist. Here’s what precipitated that: years and years and years of Internet research into fatigue treatments on my part. (I’m not exaggerating.) One day, I was researching MS and I stumbled upon the drug, and I was like, “Holy flip, why aren’t I taking this?!?” I’ve never wanted to have to sleep 11-13 hours a night. I want to do things with my day, you know? So I marched in to see my psychiatrist and told him so, and I swear he got this look on his face like, “Why didn’t I think of that?” The drug has been very helpful, helping me get by on 9-11 hours of sleep instead.

I feared I had MS because my mom’s female cousin had it. Lyme’s disease doesn’t feel right intuitively, because to the best of my knowledge, all the problems I’ve had have gradually developed from the very beginning of my life.

Thanks to everyone for commenting!! You’ve all given me food for thought.

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