[Raigne]

Hi all! I'm Raigne. Age 47, married to G and mom of an 11 year old boy who cracks me up at every opportunity.

I am a medical freak show. Plus I'm an artist and a gamer...so I'm SUPER "different". And if the peanut gallery in the other room doesn't hush, then NOBODY is getting dinner tonight. (lol!)

I have 6 diseases and testing will be starting in the next couple of weeks for the 7th. I have Arnold-Chiari 1 Malformation (brain surgery for it in 10/04), Syringomyelia (you can get the definitions for these at ** I typed it that way as the forum says I can't put links in right now. That's the American Syringomelia and Chiari Alliance Project **), Fibromyalgia (in a constant flare of all 18 points... I warned y'all, I'm a medical freak show), Osteoporosis, Reactive Hypoglycemia, and Allergic Fungal Sinusitis (left sinus cavity). I also have kidney stones and pancreatitis that happen every once in a while. Well the kidney stones happen way more often than I like. The pancreatitis hit once really badly where I ended up in the hospital for a week and the kidney stones hit all the time.

At this point, I've had 14 surgeries, too many MRI's, CT Scans and procedures for pain issues to count and take hospital grade pain meds to get through the day. I have a great pain clinic, but even with the pain meds I can't get below a 7 on the 1-10 pain scale and I rarely sleep. I take about 24 meds a day to just get thru each day. I DON'T take Gabapentin (Neurontin) because it made me literally psychotic. It's known to do that, btw. My dr. (ex-dr, btw) said, "Oh yeah, just stop taking it. That's a known side effect that we don't tell people about because we don't want it to influence anything." So now you know why he's the ex-dr. I had started hearing music that wasn't there and if I'd close my eyes I'd have weird visions. Seriously...Gabapentin is the devil. (to me...hey, if it works for you and you aren't having suicidal or psychotic episodes then keep taking it!). I have to go old school for the neuropathic pain and take Zonegran, along with the Hydrocodone, Morphine, and all the other crap I take.

Am I complaining? Nope. It is what it is and as long as none of this stuff is a surprise to God, then I'm good. He's got me in the palm of His hand, so while this stuff sucks and hurts, I have confidence that I am not walking this path alone.

Ok, so I do complain sometimes.

Ok, so my husband says I complain a lot. I say he needs to sleep with one eye open tonight. I actually really only whine to my husband because I have to whine to someone and he's the guy who took that vow "in sickness and in health". LOL

I've had 3 dr's (2 were specialists at Barrow Neurological Hospital in Phoenix, AZ where I live currently) tell me I have MS as well. I left the testing stuff a few years back because after always being on the "Dr.-Go-Round" for so long I needed a break. Six years went by and all of a sudden I'm on a rapid downhill spiral. All of a sudden my eyesight has changed. It's only been 8 months since my last eye appt (needed to up my reading glasses to a higher magnification), yet now my vision goes blurry and sometimes it's even a bit like double vision. Last month I had 2 headaches in one month that came on and hit so fast and so hard it robbed me off proper speech. I was slurring words, etc. I was checked for a stroke and it was negative.

The Syringomyelia has me sometimes going numb in hands in feet so when it started getting worse I just thought my syrinx was filling up again with more brain fluid. Had an MRI and it hadn't grown. There's lots of spinal cord damage from it (which is why I'm in so much pain all the time - besides the Fibromyalgia), so I thought the Syrinx was just acting up. Well, sometimes I walk with a cane, and sometimes I don't because I don't have good balance. Well after those headaches my legs started going completely numb. And turning purple. That purple business was gradual at first but now even being in the sitting position with feet touching the ground for longer than 10 minutes, my feet go purple. You'd think it was a nerve issue. The new Neuro will be testing for that, too, I'm sure.

Btw, I'm not Diabetic (I had gastric bypass surgery to lose weight so I can't even have a lot of sugar. But I'm also Reactive Hypoglycemic so I have to have SOME sugar to keep me from passing out). I get pins and needles on the bottom of my feet now, which hurts like crazy at times.

As I've had so many MRI's my body decided to become deathly allergic to the Gadolinium contrast that's used. We found that out the hard way. Anaphylactic Shock and near death is not fun. Just FYI. So my last MRI on my cervical spinal cord showed that my syrinx hadn't grown but the parts of the brain that was caught in the scan showed a bunch of white spots that weren't there a year earlier. Like... ALOT. Not sure what that was, but significant enough for me to be told I HAVE to go see the Neurologist. The NeuroSurgeon is the one who scanned me to make sure my Chiari bone stuff hadn't grown back as that would have maybe solved what's going on with me now. He said surgery isn't required but I'm symptomatic enough to HAVE to see the Neurologist so I can get tested for MS.

6 diseases is enough. I really, really, really don't want a 7th. I am on Social Security Disability (took 1 time on my own trying and once with an attorney to get it. The Gov't dr who tested me the 2nd time had actually heard of Chiari and Syringomyelia and he literally told me how sorry he was that I have them.), and I homeschool our son. We have a huge home school community here in Phoenix, but since one of my diseases (Allergic Fungal Sinusitis) will go away (according to my ENT) if I move away from a desert climate. We're hoping CA (where my husband is from - I'm from Texas), Seattle or Portland.

So that's me. I'm glad to have found this forum and I look forward to getting to know others in my situation. Maybe not the freakshow 6 disease situation, but neurological problems, etc.

[St George 2013]

I'm Debi from Georgia and my.....you do have quite a lot of issues ! Sounds like you have a handle on them mentally which is always a good thing I'm 51, married for 34 years and have 2 grown children and 6 grandchildren The loves of my life

I have small fiber neuropathy in my feet, hands and upper right arm. My feet being the worst to date. Who knows what will hurt tomorrow ? ... lol

I'm just starting on this journey of 9 months and they did start me on gabapentin....got me up to 2700 mg a day and made me pretty crazy.....could hear a quiet conversation going on in the next room when no one was there He lowered me back down to 1800 mg and added 60 mg of Cymbalta. That has actually cleared my head some and has made it a little easier to deal with this pain. But I still cannot clean house, grocery shop or cook.....that's my goal. I was just approved for disability so now I can totally focus on getting to my goal which I know will be a long road for sure.

Welcome to NT......I like the vibes I get from your post !

Take care and please keep us posted.

Debi from Georgia

[Darlene]

Raigne,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Sad to hear what you are going through. When you believe in God you know you are under care. He puts you on a test on how you can cope with the many heath problems a person can go having him with you.

I am a true Texan, lived here all my life. Ang love to be here around my family. Hope you and your DH find a nice place to move to.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[Raigne]

Thank you both for the warm welcome. I apologize for not coming back, before now, to say thank you. I appreciate you both taking the time to say hi and "welcome".