With the diagnosis of MS for my son, I have been checking out support groups and joined one on Facebook.  We received excellent medical care and treatment from beginning to end.  Starting with our family doctor who is actually a PAC to every single, doctor, nurse and technician at Primary Childrens Medical Center.  They are still providing us with excellent care even now that we are home.  I can't say enough about how great they have been.  After reading a post on the Facebook MS group though, I am wondering how different our story would be if we hadn't had health insurance.  It scares me to death to think where my son would be at this point without insurance.  I'm posting here the initial post made by a woman in Kentucky.  Such a horrifying experience should never take place here in the "land of opportunity"!  I fear how many other people go through similar nightmares and suspect the number is much higher than any of us can know.  Even one is too many however.  This woman is now getting help thankfully!

A quick update and then the post followed by the link if you should want to read the rest of the replies:  We are home from the hospital and he has started school again.  This past Friday was his first day back.  The school has been great so far in working with us to make it happen.  He is holding his own so far, though now his symptoms include random double vision, blurred vision and dizziness.  I'm really not sure if he is ready to tackle school full time just yet but time will tell and his schedule can be changed if need be.  Having him home is awesome but we are now finding out how challenging a world it really is when you are in a wheelchair!  

Here is the first post:

"My illness started 3 yrs ago with weakness in my legs, headaches,numbness in my feet, & overwhelming fatigue. I was sent to a neurologist & went for tests that include EMG(normal)ANA(normal) MRI w/wo contrast showed lesions in periventrical & subcortical regions, lymes (normal) B12(normal) all of these tests were done over a yr. ago. Now my sx are alot worse & include severe muscle cramps & spasms, can't walk over 100ft without falling(cane isn't helping), muscle twitches(you can see me toes ect move by themselves & watch muscles move under my skin), I can only smile on L side of my face & can only move my tongue L when DR. asked me to stick it out, Electrical shocks & vibrating feeling all over, nerve pain, bowel incontinance but bladder is retentive,dizziness, I feel like I have armour on when I breath or like I'm getting a bear hug, tremors when I use my hands ect, motion sickness, slurred speech, head tends to lean to the R., things like propping my head up on my arm cause it to shake & tremble. I The 1st neurologist said MS & sent me to MS specialist who didn't think it was MS (my symptoms were not as bad at the time over a yr ago but have significantly worsened). Now I can't work, don't have insurance & I'm in a rut as to what to do. Without a dx I can't get SS Disabiity & without the disability & medical aid I can't get a dx. My family Dr. thinks its neurological & sent me to a different neurologist who says I need another MRI & to call him when I find help with some sort of medical aid. In the meantime I've since had to go to the E/R & was basically dismissed once it was discovered that I don't have insurance. I had been watching TV when all at once I lost control of my bowels, hobbled to clean myself up then became very nauseated(not like a virus or eating bad food), then I couldn't move my L side at all (the R side had been the weakside until then) I couldn't grip my cane with my R hand either, felt like I was fighting to stay concious, my forehead started to twitch really bad then I couldn't feel anything at all. They had to carry me into the E/R , where the E/R Dr pinched me (I still couldn't move), everything sounded far away although I could faintly hear, I had a catheter & IV & didn't know it until I left. There were alot of tests ordered until the Dr. realized I don't have insurance & then all but a catscan went away & so did all nurses , Drs, ect. They wouldn't even raise the head of my bed up so I could vomit (husband was there thankfully), when the DR. came back 41/2hrs later I still couldn't move & he told me he was sending me home & that it was just anxiety. I have never had a hx of anxiety! Yes, I'm frustrated but I deal with it as best I can & am also seeing a psychologist just to take the whole anxiety dx off the table. I'm 39 almost 40 & have worked hard all my life & it literally feels like I woke up 3 yrs ago in someone elses body. I don't know & have never used drugs or drank. I do smoke but am in the process of quitting. I guess what I need to know is, could this be MS (although I didn't think it progressed this quickly) or could this be a neuro-muscular condition? ALS & PLS have been mentioned & would it make a difference in the EMG results now that the muscle twitches are so much worse. I sometimes feel I'm getting weaker by the day.I can no longer do the things I enjoy like gardening or being outdoors due to the heat. I have to have my Husband present when I shower due to weakness & falls (one incident I wasn't able to get out of the tub because my arms & legs wouldn't work). I'm afraid to ho;ld my grandbabies because my arms go dead without warning. Any advice or suggestions would be appreciated! Thank you!"