eye issue/possible SLE ?'s

[Guest guest]

We were planning on going to Iowa City today for Luke's eye problems but then last Friday he told us his eye sight was much better. From experience I know how frustrating it is to have symptoms and set up a doctor appointment and then for the symptoms to clear up before you get there to hear "I don't see anything wrong" from the doctor. I am wondering if this could be a stroke episode in Luke because we have also noticed his mouth pulling to his left lately when he speaks as well. A while back he was having very bad headaches and extremely tired. Boy does that sound like Asenath and Zipporrah when they have them! Anyway, now that he is better I am wondering how far to take the testing. Dean wants an MRI to see if anything shows up and our neurologist at Mayo would like to run some nerve tests on him due to the lack of feeling of pain or temperature in his limbs. Another strange thing is he says the only place he can feel heat or cold is his spine! Anyone else have this??? He says he hates baths because the heat or cold is extreme in that location. He prefers baths (probably cause most of his spine is out of the water). Dr. Whiteman wasn't very worried about Luke due to his muscle tone, but is very curious about all these symptoms. I just wanted to get you guy's thoughts on all this. I may try to set up a neuro appointment for when we go out to Mayo on the 26th of this month. Anyone else going to be there May 26th?Darla: mommy to: Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma... Zipporrah,(5 mon.)Mito, strokes, sensory issues, feeding/breathing issues...Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Best wishes for Luke on his appointment. I think with your family's history, I would still continue the testing. My oldest daughter is 7, and had to have a MRI for migranes. She actually thought it was cool, and wanted to do it again. I have no experience with nerve testing, but I would ask how detailed it is before they do it. Maybe they can do the MRI first, and then if they do not get answers, then go foward with testing. The shower thing is very unusual, I would want to get that checked out. I know a family with a son with sensory integration problems, could he possibly have this type of problem? These types of problems can cause alot of discomfort to the individual, where is soothing to a person without these issues. Best wishes for your entire family.

[Guest guest]

Darla,

I know from experience that it is hard to think about your other

children possibly having mito. I think it is better to be pro-acitve

and know then to sit and wait and then have it be too late. I would

think an MRI would be a good start. That would show signs of past

strokes, right? Are any of your older kids on the cocktail? I would

think that this too would be a good start. Most of them are vits and

cannot hurt if they don't have mito. Just a thought. Let us know

what you decide. I know my other two are showing soft signs

(dysautonomia and hypoglycemia). I am going to try to get them in

with Cohen this yr.( I called last week and am waiting for out appt.

time) and move ahead with their diagnosing and treatment if needed.

I think we wasted too much time with (about 1 1/2 yrs.) and

not doing the Mito treatment. It harmed her.

Dawn