UPDATE 9/11: He started B-12 injections but they want to give him one a week which isn't enough [we're begging for B-12] so we have to supplement with a naturopath. He is still having breakthrough face pain even with the maximum amount of meds. We've applied to the Mayo clinic for 2nd opinon on whether he has M.S. [his lumbar puncture came back normal!] and if he can get a surgery on his trigeminal nerve to stop the pain. After his neurologist makes the referral it will take 7-10 days for Mayo to get back to us on whether they will take him as a patient. Hour to hour. Day to day.
My husband was hospitalized Friday night after 13 hours in the Emergency Room. At the time they were ruling out a stroke and trying to stabilize his face pain from trigeminal neuralgia, assuming this was an M.S. flare or outbreak.
8 years ago he was diagnosed with T.N. after experiencing severe shocks to his left jaw that left him incapacitated. It's like being hit by lightening in your face. Only the drug tegratol can suppress the pain.
2 years ago he was diagnosed with Multiple Sclerosis. His MRI shows lesions on his brain that are considered classical MS lesions. Trigeminal neuralgia can be a symptom of M.S. Two neurologists diagnosed him. Another still isn't sure he has M.S.
But something is wrong. He was confused, couldn't walk very well, his cognition compromised when we brought him into the E.R. That's why they had to rule out a stroke. Now his neurologist is saying that confusion and loss of memory is not a symptom of an M.S. outbreak so she ordered a lumbar puncture for today and a lot of blood tests to rule out some things and look for others. She met with us yesterday and performed a small neurological test on him. She discovered he is pretending to be better than he is, because he wants to get out of the hospital. She yelled at him, in a quieter neurologist way. Told him this is about his brain, she has to figure out what is happening with his brain.
I have to call the insurance company to confirm he has dual coverage. After a full day in the E.R. and possibly 5 days in the hospital I don't even know what that will cost us. My car has a flat tire. I need to get it repaired today. My puppy needs to be run. The new grass needs to be watered. The laundrey needs to be done. The floors must be swept and the dishwasher run.
I put my multi-pierced teenage son on notice: I need your help. Daily I will ask you to do something. Please show up and do it. [he did not.]
I am answering long-distance phone calls. I am arguing with Doctors. I am questioning nurses. I am bringing in food. Chopping wood. I am trying not to panic. The neurologist told me yesterday she pretty sure that whatever this is, is reversible. I don't even know what that means in the long run. I am missing work. He is missing work.
I must pay the bills. I need a wife. I must pack more clothes. He needs distractions. He is very scared. We both are. Carry water.
TIP:
Enter the amount, and click "Tip" to submit!
Nikki Stern
BuffyW
Sally Swift
Lainey
Kathy Knechtges
odetteroulette
Salon.com
Comments
I have to say I disagree with the neurologist. MS can cause cognitive problems and memory loss, but many neurologists don't like those symptoms and they ignore them or blame them on other things. I know they have to rule out other causes, and maybe there is something else going on with your husband, but for them to say that MS doesn't cause those symptoms is incorrect. Brain lesions and damage to the nerves cause a multitude of symptoms. Why are cognitive problems and memory loss so hard for them to believe? They (neuros) frustrate me to no end.
But still, I'm just plain sorry and so wish this wasn't happening to you two. Wish I was nearby to tidy the house and walk the puppy. (I can't fix a flat tire, but I could take it to a garage!)
And breath. Slowly. The good news is that the doc thinks it is reversible. The brain is an amazing instrument. And not MS? That is a good thing too. Now, let them work on it and get to the bottom of it. Scary as it all is right now, let them figure it out so that he can get out of there and not have to go back.
I am sending you tons of good thoughts. It will work out. It will.
if i were there, i would help with the laundry and with giving the boy a gentle kick in the ass to come through for his mom.
hugs to you.
Take care of yourself, Deborah, and a big hug.
I´ll be thinking about you and your husband.
Marcela
The face pain still breaks through. He is still neurologically compromised: no memory, confused. He's on a LOT of medication. And he is angry, and frustrated and scared. He might have to take a medical retirement and this depresses him.
My own experience right now is of fear and sadness. He's a terrible patient and takes his anger out on family. It is not easy being here right now. Thanks for checking in.
And in my experience with all of this so far - it is all reversible. It's just about hanging on to that piece of splintery plywood until the storm clears. Praying for you tonight - get in touch when you can.
Breathe.
Call on friends.
Drink gin.
Do what you need to. This stuff is so very difficult and overwhelming. And a surly teenager in the middle of it all.
Be very, very gentle with yourself.
first off, thank you for this strong, honest and raw piece. (i almost spelled out "peace" instead, wishing you to have some, I suppose.)
times like this, it's just one step at a time. and that son of yours better effin' kick in or i'll fly there and make him kick in, damnit. sorry but really, what the eff?
cry for yourself and get it out!
Love yourself first. Kiss Ken for Me.
I love you , my dear friend.
Aloha nui
K
Seriously, find someone who can talk to your kid -- if he doesn't help during this time he'll regret it but he's probably freaking out, too.
Keep chopping the wood.