[irritatedkitten]

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!

[SallyC]

((((((((Iritatedkitten))))))))

[Momma's Kids]

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.

[SallyC]

I like this welcome sign.. From another Forum.

[jenng]

The MRI of brain & spinal tap is negative. I have something, but not being caused by MS. Thank you for listening & your support. (((Hugs)))

[msbluis]

Hi , Rae,

I've had PPMS for 20+ years and I've had experience many of the suggested treatments and assistive devices available.

I've had a suprapubic catheter for over 4 years. I would be happy to answer your questions regarding it or regarding other issues with which II have experience.