Hi Lara, just wondering if you can post a link to that list, I am interested in seeing it, even though my son is off the Miralax. By the way, its been 3 days with no migraines or muscle spasms and although he's still having some weakness in his legs and feeling wishy-washy in general, I think it's safe to say that Miralax was the culprit. We'll see what the next few days bring.

Here's the link that I found.
Not sure how reputable the info. is from there, but here it is...

http://www.druglib.com/reported-side...riousness_any/

So I brought my son for the tilt table test today. Unfortunately the test couldn't be completed, his legs were too weak, his knees started buckling and within 5 minutes, he started sliding down the table, the straps under his arms were the only things holding him up. The technician tried putting some pillows under his legs to support him, but it just didn't help. He lasted about 15 minutes and she said she didn't see any major fluctuations in his BP or heart rate and stopped the test. I really wasn't expecting this test to reveal anything anyway, he hasn't had any fainting spells or dizziness, so I don't know why the doctor ordered it in the first place.

So we're still at square one. I contacted his neurologist's office to request an authorization for a wheelchair and sunglasses (his eyes are still very sensitive to sunlight, even on a cloudy day) because he weighs 70 lbs and I don't have the strength to carry him into all of the appointments he's going to have to go to over the next few weeks. I hate to have to put him in a wheelchair, even if its just for appointments, I feel like I'm giving into this problem and I worry about the psychological effect it will have on him, but I don't know what else to do, I have to get him to his doctor's appointments and I'm relying on cabs to get us there because I'm without a vehicle right now and there is no one else around to help me out.

So that's where we're at right now. Just wanted to let all of you know and thanks again for all of the advice/support, I really appreciate it.

Sally

You mentioned in your first post that all the tests were normal except for the VER. You say your son has been ill for about 6 months. Has he become progressively worse over time or up and down with same symptoms. I wonder if you remember anything unusual around the time he became ill. e.g. did he get the flu, or a viral illness or have any immunizations or such? I guess they've ruled out he may have something like Guillain Barre [edited to add - although I just went and re-read one of your other posts and you say he's OK 90% of the time which would rule out GBS and lots of other things].

This must all be so worrying for you. I'd be beside myself with worry. The fact he's now needing to be carried is just awful. Let us know when the porphyria tests come back. It's good they're testing for that. I hope you find some answers soon and that your son recovers very fast from whatever is going on at the moment.

Hey, I'm so sorry that you are both going through all of this. You shouldn't feel guilty about seeking another opinion, this is your child. Get 50 opinions if that is what it takes and know that you have a whole team of support just a key board away. I know you said these usually happen at time have you kept a daily diary of food, meds, environmental stuff etc? Sometimes it makes it easier to identify what a trigger is if its in black and white.

You guys will get through this.

Phil 4:13 I can do all things through Christ who strengthens me. :circlelove:

Hi lara - I don't recall anything unusual back when he first started becoming symptomatic, no virus, immunizations, etc. Because all of his tests keep coming back normal while the weakness in his legs continues to get worse with each passing week, I'm beginning to wonder if ALS is a possibility. From what I've read online, ALS is usually diagnosed with an EMG when every other possible disease/illness is ruled out, and since his neuro hasn't scheduled an EMG for him, I am going to mention it when I hear back from him on monday (I had to put a call into the office friday to let them know that he couldn't make it through the tilt table test, couldn't stand for more than a few minutes, etc)

He had a horrible night last night with muscle spasms in his legs from trying so hard to stand on the table for the test, when I was trying to help him get undressed in his bed he was screaming into his pillow, it was heartbreaking. He's asking questions like, "Why is this happening to me?!" and I have no answers, all I can try to do is comfort him.

I hope we'll have some answers soon. Thanks to everyone for your advice/support.

hi - this is so distressing for you both. Has anyone looked at the possibility of systemic vasculitis.....here are some of the symptoms. No one will usually have all of them. The burning sensation and headaches you mention are classic symptoms of vasculitis as are the weakness and 'nervous system' disturbances you describe.

quoting from a website http://www.ninds.nih.gov/disorders/v...vasculitis.htm

Hi Magirose
When you quote from a website that allows copy/paste (as that one does) please be sure to add the quote tags and link

If the website has copyright, then just a snip and the link

thanks

ok, thank you for that. Will remember to do that next time. x

I ran across this genetic disorder while online today.

I found a link for a poster on our PN forum.

You might want to bring this up with the doctors evaluating your
son:

http://ulf.org/adrenomyeloneuropathy-amn

This genetic disorder presents in young males, and has many
different characteristics. (see the symptom list). Alot depends on
whether the brain is affected or only the peripheral areas and spinal cord. There is a blood test to reveal it however. Since it is rare, many doctors may overlook it.