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It's back.. worse than before.

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Unread 12-12-2012, 12:46 PM   #1
AynaDee
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Default It's back.. worse than before.

Hi everyone..
Sorry I tend to drop off the face of the earth sometimes..
When I'm feeling better I am out doing all that I can.

I have had my relapses.. I have learned from each and everyone of them.. EXCEPT I need to SLOW DOWN.

This exacerbation is BAD.

My vision has been so bad for two weeks now.
Double-triple-sometimes quadruple vision.
Weakness.
Wobbling.
Cognitive dysfunction.
Tremors.
Spasm.
Bowl Issues.
The horrible spins/vertigo.
Which of course is followed by nausea.
Moods are INSANE.
Things that are not moving are moving.
And no matter how still I sit, I'm still 'moving'.

What concerns me the most is..

I am on day 3 of 5 days Solu-medral. And have not seen any improvements.
On another bad note.. This is my 5th session of IV since I was diagnosed in 09. Another thing that's different about this drip that concerns me is I don't feel like I normally do when on IV. Usually I have energy, almost to the point of insomnia.. This time, I'm battling fatigue, before, during and after the drip.
I am praying that this is just such a bad flare that It's taking more to get the inflammtion down.. Very scared that the solu-medral is not going to work anymore. When I finish this round I will be starting a monthlong taper of nasty Prednisone.

My job that I found to work with me and this disease is a DELIVERY position.. So I am out of work until I can get the -non-drunk- eyes back on..

No medical assistance, no ssdi.

I just don't know how I will make ends even come semi-close to meeting.

My doctor sent me to the hospital to be admitted for these 5 days.
I probably should have done so, but since I have zero insurance, I begged them to just let me come in everyday this week for hour long drips.

Guess since life is, once again, put on hold.. I'll start the ssdi process all over again. I was also thinking about having my friend take me to DHS to apply for medicaid while I look this bad.. They seem to think I make all this stuff up.. YEAH I TOTALLY WISH ALL OF THIS WAS NOT REAL.

I just want to go back to work and be like all the other healthy 25 year olds.

Sorry for this depressing rant
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Unread 12-12-2012, 12:52 PM   #2
ANNagain
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Thanks for the update, AynaDee. I am so sorry that it is so bad. The spinning and moving and vision- this sounds impossible to manage.

About the steroids- often the results take up to 6 weeks for me. And, I also do not get jazzed up and able to scale small buildings (or clean the house) while on it.

Hang in there,
ANN
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Unread 12-12-2012, 01:04 PM   #3
AynaDee
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Quote:
Originally Posted by ANNagain View Post
Thanks for the update, AynaDee. I am so sorry that it is so bad. The spinning and moving and vision- this sounds impossible to manage.

About the steroids- often the results take up to 6 weeks for me. And, I also do not get jazzed up and able to scale small buildings (or clean the house) while on it.

Hang in there,
ANN
It is quite too much to handle.. Last week when my vision was just double I decided I could totally go get groceries.
OMG WORST IDEA EVER!
Definitely lost my balance 2 different times, one falling into a side cardboard stand of mini goldfish boxes.. oh how embarrassing..
I'm pretty sure the four people standing around me thought I was intoxicated.. If they only knew
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Unread 12-12-2012, 02:10 PM   #4
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You poor baby, how horrible. Ann's right about IVSM taking awhile to show any good or improvement. Especially if you've had it a few times. It sometimes stops working, for some peeps. It stopped for me and it worked so well, the first time I was on it.. I hope that is not the case for you.

Hang in there and hang here and let us know when you start healing. Feel Better.
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Unread 12-12-2012, 09:28 PM   #5
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Im sorry you have to go thru all this. When I was on ivsm, I had it for 5 days, then taper with the prednisone. Had that for about 3 weeks. It never made me energetic, I was always sleepy and tired and for the life of me I couldnt stay awake. I had the best sleep I'd had in years. Once the ivsm was out of my system, I was back to insomia land It took almost 4 months for me to notice any improvement at all. This whole thing is such a wait and see game. Wait and see how it affects you, wait and see if the meds work, ugh !! Hang in there, we're all pulling for you!
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Dx RRMS April 1992
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(allergic reaction to all)
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Unread 12-13-2012, 11:13 AM   #6
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Originally Posted by KittyLady View Post
Im sorry you have to go thru all this. When I was on ivsm, I had it for 5 days, then taper with the prednisone. Had that for about 3 weeks. It never made me energetic, I was always sleepy and tired and for the life of me I couldnt stay awake. I had the best sleep I'd had in years. Once the ivsm was out of my system, I was back to insomia land It took almost 4 months for me to notice any improvement at all. This whole thing is such a wait and see game. Wait and see how it affects you, wait and see if the meds work, ugh !! Hang in there, we're all pulling for you!
Waiting game indeed.. I need to get back to work so I can pay for my bills. But I have been staying in bed and I am finally seeing a tiny little bit of improvement today so that's good right?!

Also going to reduce hours again.. We'll see if 15 hours a week is acceptable by this disease.. MS is such a wimp..
Thanks for the support everyone!
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Unread 12-14-2012, 04:33 PM   #7
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i'm sorry you're having such a rough time.
i don't know much about roids, only by others' experiences.

but, i do hope you begin to get better.

i would discuss with your dr about ssdi etc. i know it may be tougher when you're younger to get approved. you can also talk to a disability lawyer and see what they say.

applying for govt benefits is a good idea. we work hard and pay taxes. it's no crime to get help if possible.

get well soon.
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Unread 12-17-2012, 01:16 PM   #8
AynaDee
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I have an appt. Wednesday to hopefully get some medical assistance.
I have not seen a neurologist since 2010.
I am hoping to be able to see some doctor..
My eyes are still not processing as quickly as needed so I am still out of work.
I do have some strength built up now though so that's good

I feel horrible because my family will not be able to have Christmas presents from me this year..
maybe around tax returns time though!

I suppose what is mainly important at this point in time is getting my health back to normal so I can be on my feet again..
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Unread 12-18-2012, 01:06 PM   #9
tkrik
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I'm sorry you are going through a tough exacerbation. I'm glad to hear you are doing a little better.

Steroids make me feel awful! It takes a good week or more after to start feeling human again. They do increase my fatigue and just make me feel ill. It sounds like you are going through something similar. By chance, is it possible you had some sort of virus or infection before starting the steroids? The combination of an illness and steroids can make you feel more fatigued and ill. That only happened to me once.

Getting some sort of state assistance will help. It will definitely take some of the stress of medical bills off your shoulders.

I agree with Judy. Discuss getting SSDI with your doctor(s). The more support you have from your medical team, the greater your chances of receiving SSDI. Talking with a lawyer will help as well.

Again, I hope you start feeling better soon. Let us know how you are doing.
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Unread 12-18-2012, 01:24 PM   #10
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Hi Ya Trish!!
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