I Think My Mom's Death Could Have Been Prevented

My mom passed away Jan. 6, 2012, after a 7-year battle with, what we were told was Multiple Sclerosis. My mom had all the classic Chiari symptoms, many of which do mimic MS. Her diagnosis of MS came after a spinal tap resulted in positive oligoclonal bands in her CSF. She never had a brain MRI, or if she did, neither my brother nor I know about it. We are in the process of trying to get copies of her medical records from the hospital where she passed. I do not blame the hospital or dr's; I am not trying to get money from them; I am simply trying to find out what really killed my mom. Her Death Certificate says "end stage MS; congestive heart failure". The problem is......over her last 7 years, the dr's changed her medications so many times because they weren't working. She had 3 strokes; one of which left her needing a wheelchair. The MS medications caused her kidneys to shut down, so they would change her to a different one that ended up causing her liver to quit functioning.

When she passed away, I realized that I needed to get in and see a dr about my symptoms. She and I were like twins.....not only physically, but health-wise as well. We looked the same, and we were built the same. We had the same types of headaches, back pain, dizziness, etc, etc....you get the picture. Every single thing that she would complain about or just mention......I have as well.

I can't escape the feeling of guilt for not getting myself to the dr sooner. I keep thinking that if I could have been diagnosed earlier.......maybe I could have stirred things up with her dr's. They were all very nice....and very confused. They kept saying that her MS was "different", and they had not had a patient "like her before". Maybe she did have a brain MRI.....and they just didn't recognize the Chiari. Idk....she was up in South Dakota at the time living with my brother because he was in the Air Force and he could pay for her medical bills better than my husband and I could.

I'm not really asking for any advice.....I'm really just wanting to put my experience out there so that maybe someone will read this who has a family member, or even a friend, who seems to exhibit the same symptoms....maybe they will push for that person to get checked out for something different. Dr's are taught that if they hear hoofbeats, they are supposed to think "horse" not "zebra". Sometimes the zebra can kill you if you're treating it like a horse.......


Thank you so much.....I lost both my parents in a year's time. My mom, age 62, in 2012 from "MS" and my dad, age 66, in 2013 from cancer. Not a day goes by that I don't wish I could pick up the phone and talk to them.

I called the hospital today and have things set in motion for my brother to go pick up copies of both mom's & dad's medical records. I am anxious to look through them........I'm torn between what I hope to see. Do I pray that she really did have an unusual case of MS? Or do I pray to see undiagnosed Chiari? She was in pain and suffered for years.......I don't want her death to have been in vain.


Wow, you could have been describing my mom....except that my mom's teeth all crumbled and fell out by the time she was in her 40's. She had a full set of dentures from then on.

I have not had a sleep study done. Yes, fatigue is still a big issue. I had a very big weekend last weekend and definitely paid for it. I stayed in bed Monday & Tuesday and just did minimal household things yesterday. From the back of my head all the way down to my tailbone hurt so badly that it was hard to walk. I was also very dizzy and cold all day Mon & Tues. Today, however, I am feeling much better. Only my neck and the back of my head are hurting, so that's a plus! My appt with my NS is on the 23rd. I am hoping to get a Lumbar MRI ordered, since I've never had one and that's where the majority of my back pain is located. Also, I have printed out info sheets to take just in case he questions my EDS & dysautonomia test suggestions.....We'll see how it goes!