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An update on my condition
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Autumnsprings
Autumnsprings
Con Artist

Jul-28-2016 21:20

Hi everyone.

I realize not everyone knows of cares about what's going on with me (and that's fine! 😉)

But for those who do, it's easier for me to do this than send individual PMs.

To sum up, on Saturday, the 16th, I noticed I was losing my peripheral vision in my left eye. This terrified me. I told Justin (jroepel, my fianće) after he got home from work.

By Sunday, I was essentially blind in that eye. We went to the ER. They did a head CT and some blood work. The bloods were fine. The CT showed something called an arachnoid cyst. Apparently they're common, benign and don't usually cause symptoms. So it wasn't the problem. The ER doc referred me to an ophthalmologist.

On Monday I rested because I was exhausted.

Tuesday I called the opth and got an appointment that afternoon. He said my eyes were identical. No obvious problems. The loss of vision was probably because of inflammation of the optic nerve. He wanted to see my eyes without dilation, so I went back Wed morning.

Wednesday he looked again and there was no change. Retina had no tears or anything like that. He ordered an MRI. I got that done that afternoon.

Thursday morning he called to tell me the MRI showed inflammation of the optic nerve. It also showed I have Multiple Sclerosis. He ordered a 5 day course of steroid infusions and referred me to a neurologist.

I went to the hospital everyday so they could pump massive amounts of steroids into my system.

I was lucky, blessed, whatever, that the neurologist could see me on Tuesday, the 26th. Appointments usually take months to get. I got seen within a week.

On Tuesday, I finished the steroids and saw the neuro. He was great.

He showed me the MRI so I could see the lesions on my brain. There are about a dozen, which he indicated was a small amount. The lesions were fairly small. The two biggest ones were in my vision and balance centers. Surprisingly the one in the vision center was not causing the problems with my vision.
Cont.

Replies

Autumnsprings
Autumnsprings
Con Artist

Jul-28-2016 21:34

That was simply the inflammation that was being caused by the MS.

He explained that lesions will come and go. I won't always know I have them. They don't always cause symptoms. If they do cause symptoms, they will vary depending on their location.

I began vitamin D supplements because MS increases your risk for osteoporosis. He gave me something to help with the shaking and it will also help me to sleep, which is extremely important with MS.

I will begin another medication (called a disease modifying treatment) within a week or two. It takes a while to coordinate. I will inject it 3 times a week.

It should help slow down the progress of the MS. And it *will* progress. There is currently no cure. The doctor thinks I have what's called Relapsing Remitting MS. This means there will be times when it's not affecting my life (remission) and I will have flare ups, called relapses.

There are no warning signs a relapse is coming. they can just pop up. Rest, stress management, and generally taking good care of myself may help.

The medication will help prevent as many lesions from forming, (I think) and should make the flare ups less severe and shorter.

I have access to an MS certified nurse 24/7 through the company that makes the medication, as does Justin.

I will be assigned a mentor who has been dealing with MS for a while and been on this medication. I have several other chronic pain and medical conditions, so I requested someone who also has other conditions. They will help guide me through this.

I have a lot of people who have shown support and it is truly appreciated. I will need all the support I can get. As will Justin. Prayers, good thoughts, and positive vibes are also extremely welcome.

I'm happy to answer any questions I can, but please don't feel like I'm asking for attention or pity. I simply want to share information as efficiently as possible.

Thank you for reading this.

Autumnsprings
Autumnsprings
Con Artist

Jul-28-2016 21:39

Oh, and my vision is returning. It could take weeks to several months to finish healing and it may never return to pre-MS levels.

Breitkat
Breitkat
Pinball Amateur

Jul-28-2016 22:38

I'm glad to hear you're feeling better. ;-D

There will be days that you feel great, and days that you don't want to get out of bed. Listen to your body, and don't overdo. You and JR both need to find as much support as you can wherever you can, whether it's here or in an MS group or elsewhere. I found a tremendous amount of support and good feelings from the people here after I had my strokes. I have no doubts they will be behind you too. ;-)

Keep up the good work, and take it easy. We're all glad to hear you're doing better!! ;-D

HUGS!! ;-D
Breit and the Wish Zoo

Autumnsprings
Autumnsprings
Con Artist

Jul-28-2016 22:40

Taking it easy, finding, and obeying my limits are hard things for me. I tend to go all out or not at all. I can't seem to find a good medium, lol.

But I will learn. Or at least work on it.

Yeti Face
Yeti Face
Pinball Amateur

Jul-29-2016 00:45

I was thinking "flare ups" sounded very much like a chronic illness term before you mentioned you also had them. Do happen to have fibro?

Autumnsprings
Autumnsprings
Con Artist

Jul-29-2016 00:51

Yes I have fibro as well. I had hoped the MS would account for some of that pain, but apparently not. That was disappointing.

Vulkie3
Vulkie3
Haynes

Jul-29-2016 04:24

Thank you very much for the update Autumn. Again, my best wishes to you and Jroepel, and hopefully, you'll keep it up like you've been doing so far - it's very inspiring to see that you're not about to give up.

I fully agree with Breit on taking enough rest and listening to your body, even if that means you've got to set some limits on your daily schedule. Try to work on it, because it'll only get harder the more you delay it...


Ms Helen
Ms Helen
Con Artist

Jul-29-2016 10:47

*Hugs*

Theres's really not much more I can say than we've already said but you know I'm here if you need me :)

Autumnsprings
Autumnsprings
Con Artist

Jul-29-2016 11:02

thanks guys. the hardest thing for me will be resting. even if i'm exhausted i can still have trouble sleeping. it's quite frustrating. but im going to have to learn!

My auto injector thing came today for my medicine. This thing is like a foot long! It's not subtle at all, lol.

BadAss
BadAss
Charioteer

Jul-29-2016 11:22

If you have a hard time falling asleep, picture yourself doing a villain hunt and getting an endless string of repeat clues.

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