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Old 11-18-2014, 09:42 PM   #21
SallyC
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Hi Jenng and Welcome to the MS forum of NeuroTalk.. So sorry for your increase
in and progression of your SX. I hope that you and your Neuro can get to the bottom
of it and figure it all out. It's the not knowing that is so stressful.

Please let us know how the LP and other tests go and stay as calm as you can. The
stress only makes all your sx worse. Be kind to yourself.
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Old 12-13-2014, 08:18 PM   #22
jenng
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Default Should get my results this week...

My brain MRI was 2 weeks ago and LP one week ago. Yesterday I called my neuro's office since no one had called with any news. Surprisingly, he called himself late in the day and left a voicemail (sooo mad I didn't hear the phone ring...grrrr...) He said he would have his assistant make time for me this week for a follow up appointment. This sounds foreboding to me. If everything was fine, I'm thinking he would've just said so on voicemail. I'm trying to just not think about what if's. But honestly, my anxiety is through the roof.
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Idiopathic Sensorimotor Polyneuropathy
Atypical Migraine
Chiari 1 malformation 7 mm
PLIF L5-S1 Sept. 2013

Lumbar MRI March 2013: degenerative changes from L3 to S1. L3 and L4 have tiny annular tears with disc bulge. L5-S1 bilateral pars defects anterolisthesis (spondylosis/spondylithesis?) I have an annular tear here too, along with a conjoined left L5-S1 nerve root. Mild effacement of the thecal sac at the origins of the bilateral S1 nerve roots, left greater than right. Mild bilateral Neural foraminal stenosis.
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Old 12-13-2014, 09:59 PM   #23
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Hang in there. Let us know. We're here for you.
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Old 12-14-2014, 04:45 AM   #24
irritatedkitten
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Default having a supra pubic catheter put in

hi everyone! my journey towards diagnosis and treatment is long, angsty, and boring. four years ago i was getting by, and then i developed what i was told was CRPS/RSD. doing PT gave me stress fractures and my treatment has basically been to just take a ton of meds and hope for the best. my PM doc is the best, but he's at his limit of what he can do.

after my massive pulmonary embolism in 2012, my blood work indicated that i had lupus anticoagulant and with it came a lupus diagnosis for a few years which, when the neurological symptoms (twitching, shaking, jerking, weird fits that aren't officially seizures but are seizure like, vision disturbance, complete urinary retention, etc etc etc, i know you all know the song) became so overwhelming, the rheumatologist said 'not lupus' and sent me on my way.

my neurologist is an epilepsy specialist who seems less concerned that i'd like, given that my life has stopped. anyway. i'm terrified. i'm so tired of being a mystery, i have no one in my life who gets what it is like to be sick or hurting all the time. my husband is a fantastic caretaker, now, but this isn't what he signed up for- so i have the guilt there.

anyway. i've been rocking a foley catheter for most of the year but it gives me the most awful ureathral and bladder spasms, controlled by a combo of oxybutynin and buscopan (unless i walk, sit, breathe or irritate the catheter at all). last friday my urologist confirmed the urodynamics showed my bladder is completely dead, no indication of muscle movement at all and said he'd get me scheduled for a supra pubic catheter sometime in january (the hope is i'll be able to sit and walk again) and then they called and gave me an appt for tuesday, this tuesday. i'm terrified. just of everything. my life is one big question mark, i can't handle being a person who just lies in bed. so hi. i'm rae, if you have advice or friendship on offer, i'm accepting and will reciprocate!
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Old 12-14-2014, 01:20 PM   #25
SallyC
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((((((((Iritatedkitten))))))))
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Old 12-29-2014, 03:46 AM   #26
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Heart The scary future...

I know when you hear the MS possibility it is one of the most nerve racking and scariest of thoughts. You have all these questions bouncing like rubber balls and ping pong balls all at the same time. Calm yourself...MS like all things bring about change, the 'what if's will take care of themselves as they come along.
Your lifestyle is going to change, but you don't have to change Who you are. You are going to be the same you with or without any disease. My Pa always said you can't change ugly and you can't dirty ice. lol I've found he is right. MS is ugly, ain't no denying that one. You however can be the ice. Ice is one of the most destructive forces in nature...hey, guys...it took down the Titanic...so be the ice.
I was told after my dx in 2001 that I would be in a wheelchair within 7 yrs or less. I am still walking, and have pretty good mobility. I have had some tough times averaging about two relapses a year that put me in the ER and right on to patient care for two weeks at a time. That ain't fun but I do what I have to and you can tell by my picture I still got purty going on!!
I hope the best for all of you but getting the dx shouldn't change who you are, you been you all your life. It is not time to stop doing that, it is time to come to a place where there is caring and understanding people to help you answer all those questions. There is also crazy...like me waiting to pounce on ya when ya least expect, so hang in there and I'll save a seat for you on the porch.
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Old 12-30-2014, 12:15 PM   #27
SallyC
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I like this welcome sign.. From another Forum.
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Old 01-10-2015, 02:06 PM   #28
jenng
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The MRI of brain & spinal tap is negative. I have something, but not being caused by MS. Thank you for listening & your support. (((Hugs)))
__________________
Idiopathic Sensorimotor Polyneuropathy
Atypical Migraine
Chiari 1 malformation 7 mm
PLIF L5-S1 Sept. 2013

Lumbar MRI March 2013: degenerative changes from L3 to S1. L3 and L4 have tiny annular tears with disc bulge. L5-S1 bilateral pars defects anterolisthesis (spondylosis/spondylithesis?) I have an annular tear here too, along with a conjoined left L5-S1 nerve root. Mild effacement of the thecal sac at the origins of the bilateral S1 nerve roots, left greater than right. Mild bilateral Neural foraminal stenosis.
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Old 02-02-2015, 11:52 PM   #29
Bob-pa
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Default Not Too Sure What Is Going On

I was diag. with MS in 1974, in 2014 fall was told (by my neuro) that I have a Neurodegenerative Disease. I Googled and found it to be an umbrella disease with many things under it, including MS.

The reason for the change is that I have symptoms of several diseases, the neuro said he will treat the symptoms as they occur but he can't treat it as a whole. He said it is obvious that I have a neurologic disease but since I have symptoms of several it's hard to treat.

Anyone else know about this?
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Old 02-03-2015, 01:14 PM   #30
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Welcome Bob. I'd push your Docs for a definite Diagnosis, if I were you.
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