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 :thud:

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 :eek: 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 :rolleyes:

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..:confused: 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.:hug:

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 :mad: !! Hang in there, we're all pulling for you! :grouphug:

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.. :p
Thanks for the support everyone! :grouphug:

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.

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! :D

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..
:grouphug:

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.:hug:

:Wave-Hello: Hi Ya Trish!!:hug:

would a tooth infection count?
Right before my eyes got bad my back moler started to kill, but then my vision got so out of hand that I loss focus on the tooth..
Needs removed asap... But can that even be possible while on steroids, since it shuts down immunity??

I am so very sorry you are going through so much! :hug:

Did you hire a disability lawyer when you applied for it the last time? That's what I had to end up doing, and it worked.

IVSM is so strange, especially the side effects. When I get it, I totally lose my appetite and I can barely stay awake.

I hope it works for you!

I did get an attorney last time.. He did nothing, even at the hearing I did all the representation. I feel this time, I should do it all by myself. I was denied last time at the hearing because I made 100 over the limit the last 3 months of the year.. Now I am out of work til eyes get better and when they return I will only be allowing myself 15 measly hours a week..
I wish we could at least charge MS rent for using our bodies :cool:

Aw, that's a tough one to have this stupid disease AND have to fight for assistance! Gee whiz:(.

Hoping and praying that things work out for you.

With love, Erika

My lawyer was mostly useless. Social Security refused to pay her entire cut of the proceeds when I finally got disability 3 years after starting my quest for it. I had to do most of the work. She almost missed a deadline. My records were lost and my congressman had to find them (twice). I learned my lesson not to trust the MS group (I forget which one it was, the big one), because I informed them of my misery and they still had this lawyer as a speaker at gatherings. Good thing I had my husband to live off of while I tried to get Social Security. I fought hard to get this disability, perhaps would have been better off living on my husband's salary and then retirement, but I was determined to have justice. I got my private disability (through work) the very day I applied for it, and had a physiatrist study of my capacity, which the physiatrist said was so bad that I could not work at anything, let alone teach in front of 90 students a day. I was at a low when the physiatrist tested me and could hardly lift two towels from one table to another. But my abilities improved after going on the Swank diet for a while, and not being under the extreme stress of work; but of course I could hardly make out the SSA forms because of eye-hand coordination problems, even when I had improved. Later my eyes improved completely, although hands still weak.

I hate the system. They say there are cheaters, but I wasn't one of them, and I fought to get it!

I hope everyone had a wonderful Christmas!

I am still out of work. My eyesight is not double anymore however it still takes a second, when moving my eyes from side to side, to see things properly in forward view, still gettin a lil dizzy, and behind my eyes still are very painful.. It kinda feels like my optic nerve is going to snap when I move my eyes. I am finishing my prednisone taper today..

I guess I still dont understand ms, thought FOR SURE my eyesight would be back to normal by now... Sigh...