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long time no see! long time no see!

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Unread 04-18-2005, 10:40 AM
long time no see!

Hi girls long time no see....work has me bogged down and I"ve been going for a ton of neuro tests since seeing the neurologist.....have no idea if I"ve posted about this (memory is yet another problem but I'm sure there are lots that can relate).

Been having pain behind my right eye and visual disturbances for quite awhile......have also been falling over and losing my balance a ton.......the joints in my hands and feet are killing me, mostly first thing in the .am and at night or when they get cold....and my bladder has been flipping out like mad......so I saw the neuro and he really doesn't know but because my Mum has MS and my sister and Aunt have Lupus we need to do a ton of tests......also they found a cyst in my brain but they are pretty sure it's not what's causing the pain behind my eye....so far I"ve been for a CT Scan, MRI, Gallium Scan( this looks for tumours and something called neurosarcoids).....15 tubes of blood, chest xray...next week I go for an EEG to check for seizures and an ultrasound of my neck arteries to see if I had a stroke in my eye? Then they are testing my heart and then they are doing a spine MRI (that's where my Mum's MS showed not in her brain) and a lumbar puncture........

I've also now lost 32lbs which I love but they are concerned about because there doesn't appear to be a cause for it (I'm not dieting).

just sorta bringing the girls that now me up to date and was also wondering if anyone else was experiencing anything similiar? I've missed you all a ton sorry I've not been able to post! 's!
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Unread 04-18-2005, 02:39 PM
Good to hear from ya!

...but sorry you're still experiencing problems.
My best bud has had similiar problems since she nearly died after childbirth 6 years ago. The docs still can't figure out what's going on. They ruled out Lupus, MS and Fibro, based on all the tests they performed.
Today, with two small sons, the poor thing is still searching for answers. I hope you get some with all the tests you've had/will be having.
As for the weight loss, didn't you start losing after you went off the pill? I think that is normal. Although I don't know what normal is, since when I was ON the pill, I lost weight!
I've always been a little backwards!

don't be such a stranger!
Unread 04-18-2005, 02:57 PM
So sorry Gidge :(

Hi Gidge,
Wow, I as well, have not been onto this site in a LONG time...Just logged in as I am having reoccuring bladder pain myself after almost a year, and then to read your post!!! I remember from 2001 on reading your posts here at hystersisters, and was always amazed at your strength and support to all here. I am just sickened to read about your continued troubles, it must be overwhelming at times for you hun...I hope all your tests come out ok. and that they can find some help for your symptoms. {{{gidge}}}

hang in there
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Unread 04-18-2005, 03:18 PM
long time no see!

thanks for the support girls

it's been strangely hard to come by in my "real life" it's like everyone you think will be supportive has dropped off the face of the earth and I seem to be going this alone.......figures just when it gets really scary

so I"m just plodding along.....but it makes you wonder if people aren't here for you when you're going for the scariest tests of your life when can you count on them?

who knows if they'll figure it out I"d just be happy if I could stop falling over and my eye stopped hurting....and the tiredness.....I could do without the exhaustion......

thanks as always for listening
Unread 04-19-2005, 07:09 AM
long time no see!


I am sorry to hear about these new problems you are having. Must be pretty scary! I pray that they find out what is causing all of this and that it is a pretty simple solution. Please keep us updated!
Unread 04-19-2005, 08:33 PM
long time no see!

Oh (((((Gidge)))))) I'm so sorry you've been having such a hard time And it's hard when you don't have a support network to help you through it all However, (((((sweetie))))), you know that your Hyster Sisters will always be there for you

Aside from having flu-like pain that is similar to the pains you're having, I haven't been dealing with any of the other issues you're dealing with. I just hope that all these tests bring along some answers.

Sending tons and tons of s your way.
Unread 04-25-2005, 01:46 PM
long time no see!

well to further make things weird my eyebrows are now disappearing (???) about half of them are gone on both sides??

and sat night I was watching tv and obviously fell asleep because next thing I know I woke up in excruciating pain and had this huge cramp/spasm that went from my hip to my foot and I couldn't lie down, couldn't stand on it, and couldn't sit I didn't know what to do I was hopping around like a mad fool and of course live alone......so I thought I should go to the ER but was too scared and in too much pain to wait to get there so I took 1/2 a muscle relaxer that I have for my TMJ and tried to lie down in bed but the leg wouldn't straighten out at all.....after about 20min it started to help a little but was still awful painful so I took the other half and lied back down and that must've worked because I woke up at about 4:00am and it was much better.....but I haven't felt right ever since, dizzy, super super tired and just sort of out of it......has anyone had this happen to them? I don't know if it has anything to do with the cyst in my brain or MS or Lupus but it sure scared me, I've been having cramps in my feet but never anything like this
Unread 04-25-2005, 09:07 PM
Gidge :(


I am so sorry for ALL you are going through...I don't know where you find the strength to carry on. Here I sit posting of my reoccuring bladder spasms and you are struggling with so much more. Did you get any test results back Gidge? The spinal tap, ultrasound etc??? The Dr.'s have to get to the bottom of this, were you dizzy with your foot/leg episode? Numbness? Next time you probably should have gone to the ER. You must have been SO scared??!!! Please let us know how your tests come out, you are in my thoughts and prayers "sister."
Hugs to you,

Unread 04-26-2005, 10:32 AM
long time no see!

thanks for your reply

ya know I was busy hopping around in pain that I can't remember how else I felt besides in agony and bewildered...I couldn't remember falling asleep while I was watching tv and I couldn't figure out how I'd given myself this huge cramp or whatever it was....I actually thought maybe my hip was out of joint in hurt so bad

I called last night when I got home and left a message on the neuro's voice mail which I'm sure they're all having a huge laugh at now.....I mean how does it sound "just thought I'd let the doc know half of each of my eyebrows has fallen out and I've had a huge severe spasm in my right leg".....it's just working as a receptionist there is never a time for me to call from work so I didn't know what else to do .....he'll for sure think I"m a nutbag now

today I'm exhausted and the day has just started my bladder is freaking out and my eye is already hurting.....if there was a way to stay home I would but living alone I don't have many options at this point, thanks for listening girls my friends seem to have abandoned me at this point I guess they just figure enough is enough I don't know?
Unread 04-26-2005, 10:49 AM
long time no see!

I sure hope the test results come quickly for you. I remember how the waiting was just so anxiety provoking (MS etc...) Easier said than done, but try to relax until then. Maybe a nice hot bath after work, comforting music for you, just anything to get your mind off the ole body. I think my recent stress has been the culprit for my bladder spasms after over a year since nothing else has changed. I think our minds have much more effects on our bodies than Dr.'s realize. Keep us posted,

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