Just saying Hello

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Just saying Hello

Post by Monie on Mon Jan 04, 2016 11:38 pm

Hello from Smithtown, Canada. I would like to say how happy I am to finally be in the right place, for seven years I have bounced from forum to forum with every different suspected diagnosis they gave me, but never did it feel like the members new what I was feeling till I read some of the posts here.

I am a mom of 3, a wife to an incredible husband, a disabled nurse(LPN), who has finally been diagnosed after 7 long years, several CAT scans, numerous MRI's, 11 specialist, and so many blood test I don't think a mosquito could get a bite if they wanted to, I have had pretty well every diagnosis you can think of thrown at me and the funny of it is, the second specialist I saw in 2009, was a internal medicine specialist from the UK. His diagnosis was a migraine Infarction and he referred me back to my neurologist, he said absolutely not.

Anyway the week before Christmas this year,I was rushed in by ambulance after my youngest found me on the couch, not right. After calling his sister to get their father to come home he spoke with my BF who asked to speak to me, she later said it was like talking to a 3 year old. She called 911, and when the paramedics arrived they suspected a stroke-I didn't know the date, left sided facial droop, left sided weakness and numbness, strange laugh, time loss, poor relay, and slurred speech. Upon arrival to the ER after approx 1hr, I live in the middle of no where Razz, I was coming around slowly. Initial observation by nurses and resident led the resident to suspect a seizure, due to the large time loss I was experiencing, the last thing I could remember was 6 hours prior. She ordered a stat neuro assessment and CAT. I have been taken to the ER countless times, 4 by ambulance, yet this was the first time a neurologist would  see me in the moment. Within 5 minutes of seeing me, my new neurologist confirmed what the UK doctor had said in 2009, he suspected I was having another Migraine Infarction, and was suffering from an amnesiac episode caused by a rare disorder called hemiplegic migraines. Finally, something 2 people agreed on, and something I could believe.

So here I am! the shortened version of my history is, I started having migraines as a child, by grade 9 had developed into debilitating migraines, by 19 was on preventative meds and acute treatment meds for pain, have done them all unfortunately.  Meningitis type virus hospitalization at 18, 1st clue. Bells Palsy early 20's, 2nd clue, but then diagnosed with Fibro after my second's birth, so then many things were always said to be a result of the Fibro. Began university in 2000 at 27 and had my first HM episode I believe, walking my leg gave out, several more strange similar type episodes over the next couple years,which I chalked up to Fibro attacks.

Oct 13, 2008, I awoke to complete blackness, with left side heaviness and paralysis. I made the mistake of not going to the ER right then, embarrassed as my peers would be on duty. 36 hours later when the doctor saw me I still could not walk or use my left arm, but I did have a small amount of movement, thankfully my sight was back, and a left sided facial droop. CAT appeared normal and blood work revealed nothing. That was the beginning of living my life with HM everyday.

I look forward to reading your stories, learning from your experiences, and offering a listening ear when needed. I am a believer of we can learn something new everyday, and though I am a research guru, I am always looking to learn more from anyone I can.

Sorry so lengthy, and forgive me along the way if I make mistakes, I have read the rules, but I suffer a great deal of short term memory loss, my most debilitating symptom I think. My husband jokes soon I will forget him and the children Razz so if I do something in error, just let me know and I certainly will correct it. Happy New Year to all!
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Monie

Posts : 1
Join date : 2016-01-04
Age : 44
Location : Smithtown, NB

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Re: Just saying Hello

Post by pīwakawaka on Sun Jan 10, 2016 3:12 pm

Hi Monie, and welcome to the forums. I'm sorry that they're very quiet these days. What we need is an injection of new blood such as yours.

I too suffer from what I believe are hemiplegic migraines as my symptoms are often mistaken for a stroke. We don't have particularly good neurological services here in NZ, and migraine specialists are as rare as hen's teeth, so the best diagnosis I have had is "atypical migraine ".

I've only been a moderator on these forums for a short while, and although the rules are there to prevent abuse, I at least am quite tolerant of some rule bending if it helpful to the poster or reader.

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pīwakawaka

Posts : 272
Join date : 2012-03-11
Age : 67
Location : New Zealand

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