Help With MSSubmitted by jrd3820 on Tue, 08/12/2014 - 22:33
I’m writing this for Deacon, I found his comments on this in Nonna’s lovely care giving thread, he was hesitant to write a post about it, but hopefully this will generate some attention and help. If anyone has any ideas or knowledge on the topic please share here.
Our daughter has been diagnosed with ms. She is 17. Ms doesn't run in our family on either side, and she started going blind in May. We thought it was her contacts, and that she was having a reaction to the plastic or whatever they are made from, so she stopped using them but it got worse. Now she can't even walk, and she sleeps all the time.
I got her to eat a bit of yogurt, half a piece of toast, and a small bottle of Snapple. I have also tried getting her to eat coconut oil, royal jelly, but nothing helps. When she does eat she just throws it all up. She is always sleeping, and has no energy.
When she stands up she gets dizzy and sometimes falls down, this scares me, as I can’t do much to help her up. As I have stated here before, I am not well. I have a bad back, and can't help her much.
The Dr. put her on meds that would run 5 grand a month, and make her feel worse than she already does.
Her life is still ahead, as mine is behind. She is way too young.
I have talked to some on here and got some ideas ,but if she can't hold anything down, nothing is going to work. I am selling off things we saved for the future to get more supplies just to end this for her and us. I get to be the caregiver when at a time in my own life, I have a harder time just helping myself
I have stated before, I used to look for the good in all things, even strife, but anymore I see no good at all.
This is clearly a heartbreaking situation for Deacon o if anyone here has any suggestions or knowledge on the topic, please let him know. If nothing else, maybe send some thoughts and prayers his way.
***Updated*** More info from Deacon
-She has gotten most of her vaccines,
-Never received the gardisil shot
-After watching how they made "meat" became a vegetarian more than 8 yrs ago
-She was supposed to be a downs syndrome baby(we were told to abort!!)
-Born the pinkest fattest baby they had seen (told this by the dr's and nurses)
-She went blind in one eye last May, got that back, then the other eye went blind.
-Put her on ginger and turmeric in water (relieves inflammation) was working until she started getting sick (which was the same time she started taking tecfadera (ms meds)
-She has not been able to walk for over a month now.
-Her eyes do not track at the same time right to left. This causes dizziness.
-She complains about her legs hurting or being numb. They are also cold, one is swollen twice as big as the other one.
-She suffers motion sickness
-Hasn't been hungry or thirsty...but I push her into both
-Her oxygen levels run between 96 to %99,saw this on the finger monitor deal. Pulse and heart within norms, her speech is slurred like she has been drinking.
-We took her the ER yesterday morning, wanted to give her 3 days of steroid injections, got back around 9:30-10 pm
-Her Dr. says she has a full blown case of MS, one he has never experienced before as it all came on too quickly, he is at a loss, and called his buddy from U of M who wants to see her