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-   -   This couldn't possibly be.. (https://www.neurotalk.org/multiple-sclerosis/186875-couldnt-possibly.html)

AynaDee 04-12-2013 07:40 PM

This couldn't possibly be..
 
Another relapse? Having an incredibly hard time with talking. Its such an effort and comes out slow and slurred. And these episodes (thought at first low blood pressure but its different).. My brain starts getting real weird feeling then its like I am physically disoriented. Limbs dont do what theyre supposed to, speech gets even worse, funny feeling behind eyes. They happen when sitting, standing, walking (thats when it gets real dangerous). These episodes are becoming very frequent throughout the day and everyday it seems harder and exhausting to talk.
The spasticity in my back has intensified as well.
The speech and these spells are what concern me the most, I can deal with pain.

Neuro appt is still a month and a few days away..

Think its okay to wait it out?

It will also be my first appt with this neuro.. Switched to him in january but couldnt take me til may 15.

thanks everyone!:grouphug:

SallyC 04-12-2013 08:26 PM

No Ayna, I would not wait it out. I think I may even consider
going to the ER. At least call your Neuro and see what he/she
advises.

I hope you are feeling better soon..:hug::hug:

EddieF 04-12-2013 08:45 PM

I need a Medrol dose pack myself. I see my neuro in 2+ weeks. Will be switching from Tysabri to BG12.

Ayna does a round of steroids curb it? Does for me some & well worth it.

AynaDee 04-12-2013 09:13 PM

Thanks Sally! if I go to the er, will they perform any tests or just do steroids? I want what happens to me documented.. This last flare in dec, when my eyes were completely jacked, they did nothin but hook me up to steroids. Social security has a hard time believing im in such crap shape cuz no tests are ever performed. These episodes are scary and happen so many times a day. The speech, ive noticed I have to pause per syllabal. I just noticed I cant continuously clap without pausing. Its like im forcing the engine to go with no oil.

I was laughing in my sleep 3 nights ago, then 2 nights ago had 8 of those terrifying episodes in my sleep that ive talked to you guys about. Now that im recalling all of this, im realizing im having some serious neurological dysfunction.
Here we go again, damn ms robbing me of my youth *shaking fist in air*

Im trying to be in chill mode so I dont feed the monster, and am trying not to talk as much as possible..

As for steroids.. They usually work... But notice theyre not as effective each time.. Have had 2 or 3 (3) day drips and have had 3 (5) day drips. I dont like them and am afraid of using em all up.. Im 25 and my ms is already aggressive so id hate to use thdm all up now. But I fear these things happening to me are not ok.

tkrik 04-13-2013 11:04 AM

I'm with Sally. Don't wait too long. Call the neuro and see what he has to say. Getting the steroids shortly after the symptoms start is key. If you wait too long they won't be as effective.

If you go to the ER, they may do an MRI to make sure that it is MS that is causing this and not something else such as a stroke. They will also do a neuro exam on you, or at least they should, and that will be documented in your medical record. Get copies of your medical record as that will help you with your SSDI case. The last time I went to the ER for a flare, they did an MRI as well as a neuro exam, which I didn't do well on, and I had a "nice" 3 day hospital stay.

I hope you start feeling better soon. Please let us know how you are doing.:hug::hug:

ANNagain 04-13-2013 11:29 AM

Yes, Ayna, call the neuro and get in ASAP. Something serious is going on. Nip it in the bud.

Best to you,
ANN

AynaDee 04-13-2013 08:35 PM

Thanks for all the advice!

I am going to call 'catch' monday (its a special program thatt covers doctors and costs for people without insurance and do not qualify for medicaid) and see if she can contact the neuro to get me in asap, if not, she will prolly tell me to go to er. I am not looking forward to a hosp stay, but if we can figure some stuff out with tests, id be up for it. I went to a few garage sales with my gma today and had one of the episodes while walking up someones driveway. Stopped, waited it out for a few seconds, started and got the hard lean. Luckily I was close to the lady's house and grabbed on to her siding to balanve myself out (thank god I didnt rip that panel off). Grrr, its embarrassing. Pretty sure I look like a staggerinng drunk most of the time. At least I still throw that smile my on my face:rolleyes:

Thanks again all!:grouphug:

NurseNancy 04-16-2013 03:25 PM

i agree with the others about seeing a dr asap.
you also want the dr to be able to document the worst of your sx's (symptoms).

could you see your pcp? sometimes it's easier to get in to them.
and, they might be able to get you into the specialist faster if they make a phone call.

do you have an opthamologist? they could look at your eyes and document any problems. they can also refer.

ANNagain 04-17-2013 10:07 AM

What happened, Ayna?

I hope you are some better.
ANN

AynaDee 05-10-2013 08:45 PM

I never was able to get in early for the neuro..

Found out that I am his 1st MS patient and he's starting the MS clinic the day of my appt so that's the quickest I could b taken.


I was going to go to my PCP but he and his nurse don't like me since I've gotten them in trouble for talking about me in front of patients.

So I talked to the lady that schedules my neuro appt and she said if I think I am bad enough to go to ER.

I chose not to. My appt is finally on Tuesday :Dancing-Chilli:

However, I have DEFINITELY been progressing since I wrote this post.


My walk is much worse. Speech still gets really messed up. I am now clenching my left hand and arm when these episodes happen (when first dx in '09 it was my right arm/hand that I would clench). My friend pointed out last night, when I am having one of these episodes my left eye gets really droopy and its like the left side of my face clenches up.


I've noticed when these episodes happen and I am walking, my legs start locking up, I've got the drunk lean going on, and for some reason I laugh when it's happening EVERYTIME.

It's far from funny and is quite embarrassing so I am assuming that's PBA?


On top of all that yuck, the spasticity in my back is out of control and nonstop (which is usually a big indicator for me of relapsing) and I could sleep for 3 days straight.

I've been keeping up on me vitamins tho :D


I'm afraid the new neuro is going to make me do a DMD.. I can see I am progressing, I am not okay with it, but I am also not okay with poisoning my body.

I don't wanna take that road again.

poopy, poopy ms. :rolleyes:


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