Unexpected medical adventure

[ksinger]

I'm glad to hear you're going home! Yay!

And by the "it's not MS yet" I'm assuming that your LP was "clean", meaning no o-bands. It sounds like you've had a CIS - clinically isolated syndrome - a single attack with no prior symptoms, and no evidence of dissemination in time (DIS), meaning all your lesions were lit up when they found them - all active right now. As I mentioned above, having a CIS that means they're just going to have to watch you closely. This is a great work-up you've had though, with a ton of baseline readings, so it should be easy to watch you.

For your reading pleasure(?), on page 4 of this link, is a simplified chart with what is required to diagnose MS. This is the 2017 version of the McDonald Criteria.

https://www.nationalmssociety.org/N...peed_MS_Diagnosis_And_Reduce_Misdiagnosis.pdf

And I'm very glad for you that they have declared it NOT MS. I sincerely hope it stays that way!!!

 

[junebug17]

So glad you're being released TP! You've been through a lot these past 5 days and I'm sure it will be a big relief to be back in the comfort of your own home.

 

[TooPatient]

I'm glad to hear you're going home! Yay!

And by the "it's not MS yet" I'm assuming that your LP was "clean", meaning no o-bands. It sounds like you've had a CIS - clinically isolated syndrome - a single attack with no prior symptoms, and no evidence of dissemination in time (DIS), meaning all your lesions were lit up when they found them - all active right now. As I mentioned above, having a CIS that means they're just going to have to watch you closely. This is a great work-up you've had though, with a ton of baseline readings, so it should be easy to watch you.

For your reading pleasure(?), on page 4 of this link, is a simplified chart with what is required to diagnose MS. This is the 2017 version of the McDonald Criteria.

https://www.nationalmssociety.org/N...peed_MS_Diagnosis_And_Reduce_Misdiagnosis.pdf

And I'm very glad for you that they have declared it NOT MS. I sincerely hope it stays that way!!!

LP wasn't in yet today. As is, you are correct in the official diagnosis. That may change a bit as the LP results come in. They do have me following up with an MS clinic to stay on top of things.

 

[MissGotRocks]

So happy that you are well enough to go home! Great news that you have improvement in your vision as well. Please keep us posted and we will continue to keep you in our thoughts. So far, sounds like a great outcome!!

 

[redwood66]

After 5 days and 4 nights in the hospital, I am glad to be going home. The doctors, nurses, and everyone at Swedish Cherry Hill are amazing and made me as comfortable as possible. The teams worked hard to address my issues and had multiple plans forming to move quickly. Thankfully, I did not end up needing brain surgery! I'm following up with a specialty clinic to see what more needs to be done and where to expect things to go after this. It is not MS yet but has the potential to develop into MS. Thankful to live in an area with such great medical care.

Oh I am so glad to hear all of this! Yay for you TP! I am sure you will feel so much better just getting to go home.

 

[Bonfire]

No tumors. Not MS (not yet or maybe never). Eyesight improving. Going home!

 

[Calliecake]

So happy you are going home Too Patient!

 

[Dancing Fire]

Going home...

 

[sarahb]

Wonderful you are going HOME!! And good for your medical team & not having brain surgery, & vision improving, maybe not MS....all a huge relief to everyone I am sure!!

 

[cflutist]

So happy you are going home even though you had to endure being a human pin cushion. No brain tumor, yay! Vision improving, yay! On the radar to be watched for MS, semi-yay.

Fyi, I got dexamethasone (powerful steroid that they give to mountain climbers who develop, HACE, High Altitude Cerebral Edema, aka when you brain swells up) via IV, and took it orally for 3 days before my brain surgery. Also got anti-seizure medicine via IV.
I was fortunate that I did not have a seizure, but my neighbor who also had brain surgery did have a seizure post OP.

Please treat yourself to a pretty, you deserve it.

 

[VRBeauty]

I'm very late to this thread. So glad for the good news as it rolled out... hoping for continued good news and improvement in your eyesight. And of course, I'm very glad you're now back home!

And as for the PS'ers who so generously shared their knowledge, experiences, heartfelt good wishes, and blingy distractions with you -- wow, what a fantastic group!

 

[Tekate]

@TooPatient great news..... take care of yourself.. So very good medical care out your way. ((TooPatient))..

 

[tyty333]

There's no place like home...there's no place like home...and you get to go home! Yay!!!
Hoping for continued improvement and that this is just a one time deal...sounds like your docs are on top of things though just in case its not.

 

[TooPatient]

My vision is roughly what it was on Sunday morning. Great progress! Still just people sized shapes, but getting a bit more distinct.

 

[cflutist]

Wonderful news.

 

[cmd2014]

That's good news that your vision is improving. Hopefully it goes back to normal or near normal.

 

[sarahb]

Wonderful news...thanks for the update, was wondering this am how it was....

 

[Calliecake]

Great news TP!

 

[yennyfire]

That's awesome news @TooPatient! So glad to hear that it's most likely not MS!! That's wonderful! And your vision is improving!! Yay!! Please keep us posted!

 

[MissGotRocks]

So wonderful to hear about the improved vision! So happy for you!!

 

[mary poppins]

So glad to hear your vision is improving, TP! Sending more PS dust for more vision progress.

 

[MaisOuiMadame]

Great news!so happy for you!

 

[luv2sparkle]

TP, I have been thinking about you and praying for you all day. Sooooo happy you are able to go home and for the encouraging prognosis. That is wonderful news, and I hope it keeps getting better and better for you. You certainly need and deserve some very good news.

 

[AprilBaby]

Sorry I am late to the party. Reading initially I thought immediately of MS. I’m glad you are getting excellent treatment and you get t go home! Hopefully you get some good drs and all is normal again soon!

 

[missy]

Good morning TP! Hope you had a decent night’s sleep. Thinking of you. And sending more hugs and healing wishes your way. XOXO

 

[TooPatient]

All of the results showing in my records are normal with the exception of a moderately elevated c diff reaction protein. LP came back clear on everything results are posted for.

I have been hurting a lot the last couple of days. Just trying to get sort of comfortable is a challenge. It almost feels like poking a burn on my one arm. Lots of fun.

DH took me to buy all new pillows. (He would have brought to me but I needed to squish them all...) The gel foam things are helping. I have a mound of pillows to shift as needed to get the right support everywhere. I'm still not comfortable, but it helps.

 

[missy]

All of the results showing in my records are normal with the exception of a moderately elevated c diff reaction protein. LP came back clear on everything results are posted for.

I have been hurting a lot the last couple of days. Just trying to get sort of comfortable is a challenge. It almost feels like poking a burn on my one arm. Lots of fun.

DH took me to buy all new pillows. (He would have brought to me but I needed to squish them all...) The gel foam things are helping. I have a mound of pillows to shift as needed to get the right support everywhere. I'm still not comfortable, but it helps.

TP thanks for the update and I’m so sorry you’re so uncomfortable but glad it’s getting a bit better each day. Yay to Your DH. So sweet and supportive. And good news re your results. What is the next step? Just to monitor you? How’s your vision in the affected eye?

 

[TooPatient]

TP thanks for the update and I’m so sorry you’re so uncomfortable but glad it’s getting a bit better each day. Yay to Your DH. So sweet and supportive. And good news re your results. What is the next step? Just to monitor you? How’s your vision in the affected eye?

Follow up with the MS specialist and see what they think. I'm also supposed to follow up with my GP for completeness. The neurological opthalmologist sees me again in a few weeks too. Most of what is to come depends on what the MS clinic sees as needed.

One Dr said no driving until signed off. Another said it isn't an official diagnosis so drive whenever I feel ready. Need to ask the Drs that one too. No temptation to drive yet, but I want to be ready when the time comes. (We don't have public transportation really. Carpool with DH is mostly okay so I can get by for now.)

I'm getting more details in my vision. Not good yet, but close to what it was Saturday last week before I went to the optometrist. That is pretty good!

 

[mary poppins]

Great news that your vision is improving, TP! A little frustrating that your labs cam back normal hence no definitive diagnosis, but it's also good in that some things have been ruled out. I hope you are able to get more comfortable today and stay positive.

 

[junebug17]

TP, glad to see there is some good news and I hope in the coming weeks you'll get a better idea of exactly what's going on. I'm glad your vision is improving and I really hope it continues. I'm sorry you're so uncomfortable and yay to your dh for doing all he can to help. Sending lots of good thoughts and love, hugs to you.