Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 has he had an MRI? Spinal tap looking for certain things also rules it out. Macey was worked up for MS in 2000 because she showed demylenization on her MRI. The spinal tap did not show what ever the certain thing was it was supposed to so they eventually related it to a myenteric plexus problem and the DI. They also looked into spina bifida. Ursula - mom to (13) and Macey (11, CVID) http://www.primaryimmune.org http://www.jmfworld.org http://members.cox.net/maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 Pattie, I feel that it certainly cannot hurt to ask the dr. about it. I had loads of blood work done just about a year ago, and one was to rule out MS. I am no expert, but there are indicators that may show specific autoimmune diseases, or at least help decide if further testing is needed. Good luck! Meg, mom to , 15, allergies, asthma, growth hormone def , 10, asthma, allergies, gut issues Annie, 8, asthma, allergies, reflux, and hoping she still has those pneumo antibodies! > > This may be a long shot-but I was wondering about MS. J's > Great-grandmother has MS and has the bladder symptoms he has. I keep > looking up some of his symptoms up together (tingling legs/funny feeling > legs/legs feel weird so he says he can't run & the urinary incontinence) and > MS keeps popping up. I know that the risk is fairly low since it is his > great-grandmother who has it, and with him being so young it seems unlikely. > I just wanted to ask if you thought this might be something to ask the neuro > or am I WAY off? I also have MS in my family-- my great-uncle died for MS > complications. It is pretty far removed, but it is on both sides of the > family. > > > > Don't be afraid to tell me if you think I am crazy for even thinking about > MS.. I can take it! :-) I'm not thinking it is MS. > > I just want to figure it out! Every day his poor little underwear are > stained with urine because he leaks all day long. Sigh. I wanted to > think it was sort of normal, but the other two have stark white underwear in > the dirty laundry every day- no urine stains AT ALL. What are we > missing???? > > > > Look at the list of MS symptoms below. J has eyeball pain-of course we > always associate it with his sinus issues. but it makes me wonder because > he has had eye pain since he was little. I don't know that the Patanol > drops really help...We saw Dr. W at WFU when he was two because of the pain. > but the day we went he was having a lot of pain and rubbing his eye-he > scratched his cornea from rubbing so hard, so Dr. Weaver assumed that was > the cause of the pain.but he'd had the pain for MONTHS and continues to have > frequent eye pain. He often says his " eyeball " hurts-or both eyeballs. > AND.. He does say he feels dizzy quite a bit. (M & S never say this) I > wouldn't say daily or weekly-but at least once a moth J will say he feels > dizzy for no apparent reason..not running around or anything. Again, when > he says this in passing and then it disappears, I don't think much of it. > > > > He describes pins and needles now-and then often says his legs have weird > feelings in them. If I ask if they are like pins and needles, he says now, > but cannot describe them. He'll say they just feel weird and he can't run > or walk because of it. Prior to seeing stuff on the tight filum terminale, > we just thought it was normal-- even though M & S do not complain of this. > > > > > Early symptoms > > > The most common early symptoms of MS include: > <http://health./topic/nervous/symptoms/article/healthwise/hw 190814- > bib;_ylt=Au0w383YXh2IEQb3mJEhu2vbNs4F> 2 > > * Muscle or motor symptoms, such as weakness, leg dragging, stiffness, > a tendency to drop things, a feeling of heaviness, clumsiness, or a lack of > coordination ( > <http://health./topic/nervous/symptoms/article/healthwise/po pup/not > 26601;_ylt=Ag8j8j9kbrBxEwLNWh6SR0bbNs4F> ataxia). > * Visual symptoms, such as blurred, foggy, or hazy vision, eyeball > pain (especially with movement), blindness, or double vision. Optic > neuritis-a sudden loss of vision and eye pain-is a fairly common first > symptom, occurring in up to 23% of those who develop MS. > <http://health./topic/nervous/symptoms/article/healthwise/hw 190814- > bib;_ylt=AlzV0oMAglyS1AygtUjMnGHbNs4F> 2 > * Sensory symptoms, such as tingling, a pins-and-needles sensation, > numbness, a bandlike tightness around the trunk or legs, or electrical > sensations moving down the back and legs. > > Less common early symptoms include: > <http://health./topic/nervous/symptoms/article/healthwise/hw 190814- > bib;_ylt=Avz68us_NRELeUBdJM0wLkPbNs4F> 2 > > * Balance symptoms, such as lightheadedness or dizziness, and a > spinning feeling ( > <http://health./topic/nervous/symptoms/article/healthwise/po pup/stv > 5384;_ylt=AlmX6pwSxHhqDGUEZduRkTjbNs4F> vertigo). > * Bladder symptoms, such as an inability to hold urine ( > <http://health./topic/nervous/symptoms/article/healthwise/po pup/stu > 3076;_ylt=Amq.JUx4cyiDD4XkEj7mQGzbNs4F> urinary incontinence) or to > completely empty the bladder, or a loss of bladder sensation-an inability to > sense that the bladder becoming full until there is a sudden, urgent need to > urinate. > > If I had to describe is urinary symptoms, I would describe them as stated > above. I know I have told you many times that he doesn't seem to sense his > bladder is full until the last minute... we know that he doesn't completely > empty his bladder and that he can't hold urine (he leaks). When I search > under neurogenic bladder causes, MS also pops up. > > > > Now that you think I am completely crazy, I'll say goodnight :- ) Do you > think this is something to bring up to the neurosurgeon when we go in? > > > > Pattie C > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 Macey had an MRI of the brain, sorry I wasn't more specific. Ursula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 With the spinal tap they were looking for polyclonal antibodies. Thankfully it was negative. Her joint problems and urinary/bowel problems were attributed to other things. Ursula - mom to (13) and Macey (11, CVID) http://www.primaryimmune.org http://www.jmfworld.org http://members.cox.net/maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 With the spinal tap they were looking for polyclonal antibodies. Thankfully it was negative. Her joint problems and urinary/bowel problems were attributed to other things. Ursula - mom to (13) and Macey (11, CVID) http://www.primaryimmune.org http://www.jmfworld.org http://members.cox.net/maceyh Quote Link to comment Share on other sites More sharing options...
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