Drop attack- post dr update

[Meriweather]

Well....


I’m home now and I feel very sad and defeated right now.


I’ll update on what I found out but then I’m not answering for the rest of the night. I’ll come back tomorrow but it’s just too much right now.

The ER doctor tonight was able to get the results of my mri from two weeks ago. The report says that there is significant advancement of lesions on my spine since November of 2017. Significant.

Most likely, this is the reason for the falls, but can’t be 100% confirmed until I meet with my neuro. The dr tonight sent over a consult request and I will also be calling and leaving a stern message for him basically saying I told you so. I’ll either go see him or he’ll just set up a steroid treatment, either pills or IV. Neither option is desirable for many reasons.

The worst part of this, and the part that has me so hopeless right now, is this means that I failed on my last measure nuclear bomb option treatment that I did for the past two years. It was supposed to be the end all of medications. The one that was supposed to stop all progression in its tracks. And it didn’t. I went through hell with those treatments and the recovery and now it was for nothing.

I’m sorry. That’s as far as I can go for tonight. I hope you can understand.

Kim

 

[gemini2727]

So sorry to hear this Kim, you're in my prayers for a clear path going forward

 

[Nora03]

I hope your doctor can come up with a good plan for your treatment. Wishing you well.

 

[kimblebee]

So, good, great, amazing news is that I’m not having an attack. The mri report is pretty misleading based on a number of factors my neurologist explained to me.

Good news is that he’s sent requests to have me have an eeg (to measure brain wave activity) and a portable ekg which I wear for a day or two to see if it can catch some underlying as yet unknown issue.

Blah news is that he doesn’t have an answer..yet.

I’m choosing to focus on the positive which is that I’m not having an attack, and that I may get a disease named after me lol

So, I’ll go back to life as usual and just hope that I don’t hurt myself if/when I fall again.

 

[Kitty 34]

So, good, great, amazing news is that I’m not having an attack. The mri report is pretty misleading based on a number of factors my neurologist explained to me.

Good news is that he’s sent requests to have me have an eeg (to measure brain wave activity) and a portable ekg which I wear for a day or two to see if it can catch some underlying as yet unknown issue.

Blah news is that he doesn’t have an answer..yet.

I’m choosing to focus on the positive which is that I’m not having an attack, and that I may get a disease named after me lol

So, I’ll go back to life as usual and just hope that I don’t hurt myself if/when I fall again.

So after falling randomly 3 to 4 times in the past few weeks they tell you you're good to go without "dropping" out of the blue??? Well, Kim, good luck with that and hopefully no more falling!!

 

[kimblebee]

So after falling randomly 3 to 4 times in the past few weeks they tell you you're good to go without "dropping" out of the blue??? Well, Kim, good luck with that and hopefully no more falling!!

He did say to be careful but he can’t see a cause so he can’t just throw random pills at me to see what might work. He may realistically never find out what’s causing it. I hope he does though..

 

[wvjules]

I hope you aren’t driving until you figure out what is wrong.

 

[ronandannette]

I hope you aren’t driving until you figure out what is wrong.

@kimblebee - are you fainting and losing consciousness at all or is it more of a balance thing? I'd think that would make a big difference as to what she can and can't do.

 

[superme80]

I hope they are able to figure out what is going on!!!

 

[kimblebee]

I hope you aren’t driving until you figure out what is wrong.

I don’t drive, but if I did, I would continue to. As @ronandannette asks below, no, I do not lose consciousness. I don’t feel dizzy, or hot, or anything. It just happens. I’m then able to get up and just continue with my day with no after effects.

@kimblebee - are you fainting and losing consciousness at all or is it more of a balance thing? I'd think that would make a big difference as to what she can and can't do.

It’s not even a balance thing. I am just standing, and then I’m falling and on the ground. It’s like the bones in my legs disappear and I just fall with gravity.

 

[ronandannette]

I don’t drive, but if I did, I would continue to. As @ronandannette asks below, no, I do not lose consciousness. I don’t feel dizzy, or hot, or anything. It just happens. I’m then able to get up and just continue with my day with no after effects.



It’s not even a balance thing. I am just standing, and then I’m falling and on the ground. It’s like the bones in my legs disappear and I just fall with gravity.

"Liking" this post is certainly not appropriate, but I do like the fact you're not actually passing out. Given that this isn't an attack, does the neurologist seem to think there's a possibility it will resolve? Sadly, I know many MS patients that, when new symptoms appear, they become the new normal. Genuinely rooting that this isn't the case for you.

 

[kimblebee]

"Liking" this post is certainly not appropriate, but I do like the fact you're not actually passing out. Given that this isn't an attack, does the neurologist seem to think there's a possibility it will resolve? Sadly, I know many MS patients that, when new symptoms appear, they become the new normal. Genuinely rooting that this isn't the case for you.

He has no idea. It could be a heart condition that’s gone undetected up til now. Maybe it’s a mini seizure that’s never been noticed before. We’re just going to rule out things but I think there’s a very real possibility it may never be ‘solved’. He’s pretty confident in saying it’s not MS related because I have no active leisons right now.

 

[lisaviolet]

Thinking of you kimblebee.

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So there wasn't a change with your spine or spinal cord from your recent MRI?

I know, I know none of my business. Insert wink. I am just so confused.

Hope you get some answers soon.

 

[theluckyrabbit]

... It’s not even a balance thing. I am just standing, and then I’m falling and on the ground. It’s like the bones in my legs disappear and I just fall with gravity.

So sorry you are going through this! Weird question: did you get a flu shot (or any other kind of vaccine) recently before this started happening? Only asking because I had something similar start happening in the fall of 2018, but only after I had my flu shot. In fact, it all started happening within hours after I got my shot. The episodes increased in severity and frequency, then began to subside slowly. It took about a year for things to resolve. My neurologist, internist, chiropractor, etc. had never seen anything like it. The falls were scary (to me) because I had no idea they were coming and had not had anything like them before. An MRI showed nothing abnormal. Heart scan was normal, too. On doctors' orders (all of my doctors), I did not get a flu shot this year (and am washing hands like crazy and keeping fingers crossed) and have had no falls so far. Totally bizarre.

 

[disykat]

(((Kimblebee))) Wow. Sending prayers and pixie dust. What a scary time!

 

[maxaroni]

Hoping you get answers quickly. It is scary to be going through an illness/symptoms and have no idea what It is, how to treat or having to go through several doctors to try and figure things out. You certainly have been through a lot and sending you lots of (((HUGS))) and prayers.

 

[Pea-n-Me]

One of the easiest ways to rule out arrythmias is to wear a Holter monitor. If you fall again you note the time and they can look back at the exact and surrounding times to see what your heart rhythm was doing at that very moment. If you had a normal rhythm at that time, it can help them pinpoint what it's not. If you had an arrythmia, then they can deal with that.

I can't remember if you said you worked from home, but if you do, maybe you can set up a simple camera that follows your movements so loved ones can help look out for you (from wherever they are) and intervene if you're alone. It also might give some clues to what you were doing at the time that caused you to fall. I know it's a bit of a pain, but it would help keep you safe, and that's really important here.

 

[kimblebee]

Thinking of you kimblebee.

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So there wasn't a change with your spine or spinal cord from your recent MRI?

I know, I know none of my business. Insert wink. I am just so confused.

Hope you get some answers soon.

No, there were no changes on my latest MRI. That’s how the neuro ruled out an ms attack

So sorry you are going through this! Weird question: did you get a flu shot (or any other kind of vaccine) recently before this started happening? Only asking because I had something similar start happening in the fall of 2018, but only after I had my flu shot. In fact, it all started happening within hours after I got my shot. The episodes increased in severity and frequency, then began to subside slowly. It took about a year for things to resolve. My neurologist, internist, chiropractor, etc. had never seen anything like it. The falls were scary (to me) because I had no idea they were coming and had not had anything like them before. An MRI showed nothing abnormal. Heart scan was normal, too. On doctors' orders (all of my doctors), I did not get a flu shot this year (and am washing hands like crazy and keeping fingers crossed) and have had no falls so far. Totally bizarre.

No, no flu shots or any vaccines lately.

One of the easiest ways to rule out arrythmias is to wear a Holter monitor. If you fall again you note the time and they can look back at the exact and surrounding times to see what your heart rhythm was doing at that very moment. If you had a normal rhythm at that time, it can help them pinpoint what it's not. If you had an arrythmia, then they can deal with that.

I can't remember if you said you worked from home, but if you do, maybe you can set up a simple camera that follows your movements so loved ones can help look out for you (from wherever they are) and intervene if you're alone. It also might give some clues to what you were doing at the time that caused you to fall. I know it's a bit of a pain, but it would help keep you safe, and that's really important here.

A holter monitor sounds familiar. I though he was saying a halter monitor

Im working outside the home now so maybe I need my own reality show so I can have cameras on me all the time lol

I’m pretty nervous to have it happen at work, but I spend 90% of my day sitting so that will reduce the risk a lot.

 

[Micca]

It’s like the bones in my legs disappear and I just fall with gravity.

I've had that happen. Dr. said it's Jose Cuervo Syndrome Sorry Kim

 

[DeniseJH]

Oh geez, I'm so sorry you are going through this. I hope they can figure it out for you and stop it from continuing.