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Multiple Sclerosis Community
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220917 tn?1309788081

Hanging tough

I have had the pleasure of 'absorbing' the stuff of two of my sons who are college students this year and giving them some space to move back home but allowing them the independence they had when they were away at school. I am not working at the hospital anymore and have lots of time to devote to my sons. I LOVE it!

My eldest is studying (and enjoying!!) in Poland right now and I'm so happy he is living his dream.

The other news is my right leg is getting really weak. AND my left eye seems to be losing vision. It bums me out, to be honest.

I have been in the muggy heat of Michigan, helping my two boys packing and cleaning their apartments/dorm rooms to move back home for the summer. I knoe everyone considers Michigan to be SO cold. It's true. In winter, MI is usually very cld and snowy. But what most people don't realize is that spring/summer here is VERY hot and muggy. That's been so true lately.

I used to have distinctive episodes' where I developed weakness mostly in my left side. My face would droop on the left and I had weakness especially in my LT leg.

Now, I don't know why (except for the fact of helping my 2 sons moving home), but I am REALLY weak in my RIGHT leg. It is just as weak as my left. This is new. I'm disheartened.

Also, I seem to be losing vision in my left eye. I went to the ophthalmologist and she said my field vision test was abnormal in my left eye. I keep checking it by closing my right eye to see how the left is doing. It's dark and I have missing "areas" in my field of vision in my left eye. SO bummed.

The ophtho want to recheck in 6 months. I don't feel like it. My new neuro wants to do lots of exotic tests, like a PET scan and SPECT scan. I don't want to do that, either, to be honest. I know what's abnormal. I don't want to have empirical proof showing what's wrong. I have trouble walking and seeing. I just want medication. Something to help stop the process that is clearly happening. I want it to stop.

I am hoping that whatever evidence I acquire that proves my disability will direct my physicians to prescribe some powerful medictaion to manage my illness. I'm SO praying for this.

I hope all are well and coping nicely. God bless you all!

Take care and be well! Peace!

Love,

Zilla*
6 Responses
572651 tn?1531002957
Zilla,
Pardon me but your post conjured up images of Willy Wonka and the children who protested "but I don't want to...."  but they never objected to empirical proof.

Not working with the physical strain you have been through is a good thing, right?  Your boys are grown and scattered and now it is time to focus on Chris.  Right?

You know so much about this crazy disease as well as so many other neurological disorders, I won't pretend to offer you sage advice about pursuing a diagnosis.  Somewhere out there must be a doctor who can pin the tail on the donkey.  Right?  

The vision problems., the leg problems and everything else that is a problem for you just cries out for an answer.  I keep hoping you are pulling the golden ticket and getting your answers.  And soon.

Despite your frustrations, I am so glad to see you rejoin us here and share your journey. You know you are not alone.

hugs,
L
987762 tn?1331031553
COMMUNITY LEADER
Hey Zilla, i'm glad your back here with us too and funny enough i think i do get where your coming from, "i dont want to....." um yeah i get that though i'm not sure "want" is the right word. You could be stuck in that revolving door, declining with out the dx, no drugs to combat the cause but drugs to minimize the sx, minimize not fight the disease causing the sx, hense the revolving door ideology.

I have my moments of 'enough' and i start focusing on getting back to dx but then 'this' life thing gets in the way, and i dont have the drive to get it all set up whilst i'm just trying to plod along. So more time goes by and then the cycle continues lol not what i'd recommend but still thats the reality of it.

I dont get the waiting for 6 months with your sight, um wait for what exactly, i dont get waiting and can only fathom that its not clear what the problem is, or what the cause is, could it be macular degeneration or ON so the rational is if its macular degeneration it'll get worse but if its ON it might improve? sorry i dont get the wait to treat for sight at all!

Anyhooo just wanted you to know someone here's you!

Hugs.............JJ  
Avatar universal
I'm so sorry you still aren't getting any help.  And sorry that your right side is starting to be included in the party.  It STINKS!!!

The sight in my right eye is almost gone, and I know how scary that is.  When the doc who did my EVP's last year asked if I could even see out of it, I just shrugged and said occasionally.  He said the test was showing that there was NO sight in that eye due to the MS lesion on my optic nerve.

It's almost a year later and still no treatment or dx from the neuro.  Just his comment of, "You have MS, I just want more clinical proof".

Like you, I don't want any more tests, I just want someone to step up and help me with some kind of treatment that will keep me from going totally blind and ending up in a wheel chair.

As always you are in my daily thoughts and prayers!!

Love You!!

198419 tn?1360245956
Hey MamaZ,

Loved reading the update on your boys - so sorry to hear however, of the addt. loss of eyesight, and leg weakness.

Get your fanny in that scanning machine when you are up-to-the task just so long as it doesn't interfere w/family time of course :)

Praying with you for the right medicine, and for the docs eyes to see it as it is :)

738075 tn?1330579444
Wow, Zilla and Doni on the same day!  Good to see you both!

Zilla, that just blows with the right leg weakness, and your eye, too?  Nuts!  I hope your neuro can find some help for you.  Maybe physical therapy for a while?  One of the new mobility aids?  I'm just throwing ideas out, here.

I love hearing about your sons.  I kind of live vicariously through the next generation.  If I had the $$, I'd be traveling around the world, right now...  :-)

Good luck in finding some relief!  Thinking of you...
572651 tn?1531002957
Wow, you too, girl!!! I love seeing all these cl's come through and I hope you will stay longer.  We love you and miss you here.
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