Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
StuckAtHome
All of my symptoms that no one seems to be able to figure out have done nothing but get worse in the past three weeks. I've been having tremors, more spasticity, and muscle twitching. Last night I had another one of my "seizures" (for lack of a better word, I've never been given a decent explanation for them). My first neuro said they were pseudoseizures after one negative EEG a week after having had one. The second neuro said something happened but he does know what's going on with me.
I haven't had one in almost a year since I started my Depakote. I'm semi-conscious during them but I can't move or talk, they're scary. When I "woke up" my nails were blue which was even more scary. No one has been able to tell me what to do when it happens. I was treated so badly in the hospital last time that I don't want to go back. My nurse yelled at me in disgust to stop faking. The neuro (my first one) had me diagnosed before he walked in the door and tried to convince my parents to have me sent up to the psych ward. I actually feel ashamed of myself after I have one and I'm scared to go to the hospital after that.
I don't know what I'm supposed to do from here. I'm frustrated that this happened again. I'm discouraged about ever figuring out what's going on. No one even seems concerned about them, except me, after the first neuro told me it's psychological. I can't think straight today, I even managed to space out and miss getting my youngest son on the bus. I wish I was a decisive kind of person that knew what to do when something happens. I don't know what to think anymore, I feel like I'll never get an answer.
I haven't had one in almost a year since I started my Depakote. I'm semi-conscious during them but I can't move or talk, they're scary. When I "woke up" my nails were blue which was even more scary. No one has been able to tell me what to do when it happens. I was treated so badly in the hospital last time that I don't want to go back. My nurse yelled at me in disgust to stop faking. The neuro (my first one) had me diagnosed before he walked in the door and tried to convince my parents to have me sent up to the psych ward. I actually feel ashamed of myself after I have one and I'm scared to go to the hospital after that.
I don't know what I'm supposed to do from here. I'm frustrated that this happened again. I'm discouraged about ever figuring out what's going on. No one even seems concerned about them, except me, after the first neuro told me it's psychological. I can't think straight today, I even managed to space out and miss getting my youngest son on the bus. I wish I was a decisive kind of person that knew what to do when something happens. I don't know what to think anymore, I feel like I'll never get an answer.
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Be blessed and keep your chin up. I know this will be resolved one way or another.
LvAmy
Having gone through 2 doctors may feel rough for you, but I think it is time that you sought help of another neuro. The first one sounds like a quack to want to send you to a psyche ward just for having episodes that you cannot explain. The second one doesn't know what is wrong. Have you gone through the MS Society for a local MS specialist? Maybe this is not MS, maybe it is, but at least if you can find a MS specialist you might find some answers of definitive. Also, ask your PCP for a referral. I would certainly call your PCP about your recent episode of a seizure. Something is not right for you to have this situation occur and for your fingernails to turn blue. I wouldn't let this pass without contacting someone in your medical team.
I can only hope that you are feeling better soon. I know that you have had alot of medical issues lately plaguing you and you need a break, Take care of yourself the best you can.
The secretary seemed very nice. She said they want to do an EEG in the office right before my appointment. I asked if I should skip taking my Depakote the night before and she said not to. I'm a little confused about this since I think missing a dose of Depakote may have been what caused the issue. It's the first time that I'm hoping I'll actually have a problem. Hopefully this new neurologist can figure out what's going on.
Thank you Aimless and Lynn. It's been rough going these past few weeks I feel really run down. I really appreciate the compassion and support here. I don't know what I'd do without you guys some days. :-)
p.s., I don't know what I would do without you on this board either. Your advice and research you put into your responses are always so thoughtful and profound. I missed you when you took a break. glad to have you back!
So yes having MS can make you lool like a crazy person. Your doctor doesn't sound sound like a good one. You should switch and get someone more educated. MS can make you look like a crazy person even though you definatally not. Well I hope you figure out what's wrong and get better soon.8)
I would follow up on the second neuro. He said something was going on. Well? What does he have in mind to do to find out? Should you seek another opinion? After two seizures, he didn't recommend a consult with an eptileptologist?
You have physical things happening to your body and there is a reason for them. Unfortunately, medicine is always the process of elimination in order to determine what is the problem, they have to rule out one thing at a time.
Don't doubt yourself. Keep notes, records of appointments. Just stay on top of things ~ you're an awesome person and I don't want you to doubt yourself based on a couple of egocentric medical "professionals."
Big Hugs,
~Lorrie
but it is so not you. i was dg. at 23 and i'm 32 now and seemed to develop them just in the past couple years.
Please, hang in there and keep fighting for answers. (((hugs)))
If your neuro is also being a jerk, then I would make an appointment to see another Neurologist. Keep going to different doctors until you find one that is compassionate to you. Having M.S. is difficult enough without having cold-hearted medical staff. I am going to church tomorrow and I will say a prayer for you.