Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 I dunno my next appointment was July 25th..but since my GI doc wants the meds changed i'll probably get a sooner appointment. I'm not really concerned.. but the guy totally blew my vien.. it hurts soo bad. My mom was concerned because of how long it took..so I was curious if anyone else had that sorta experience.. instead of 40 minutes it ending up being 1 hr 30 minutes.. poly JRA 18 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 sometimes our imaginations run away with us and we start to believe the worst case scenarios. Maybe they simply couldn't get a good picture without the contrast medium, it could be something that simple. These days nobody in the medical field can be too careful (I believe the acronym for the technical phrase for that phenomenon is CYA <G>.), so they want to make sure they get it right. In all likelihood it is probably nothing more than that. When do you see your doctor again to get your results? Sherry http://www.ittybittybirdiebites.com MAY SPECIALS - http://www.ittybittybirdiebites.com/special0305.html Bid on Itty Bitty Birdie Bites at The Parrotlet Alliance Auction at http://www.parrotletalliance.org/ and support a great organization! ----- Original Message ----- From: <superstahlisa@...> > said I should be done in 20-45 minutes.. all I was getting was a thoracic spine > MRI. But it ended up being an hour and a half. Should I be concerned? My > MRI was suppose to be without contrast..and after being in there for an hour.. > they decided that they wanted contrast also.. Of course they wont tell me > why..because they aren't allowed to. But that's a little frightening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 Hi , My guess would be MTX next,how do you feel about a weekly shot?Oral doesn't always cause as good of a responce and is more known to cause stomach trouble.Don't know anything about MRI but if I just had to guess I would say they want to know what is causing the leg numbness.Try not to worry so much,easier said then done I know.Don't these people know we can concoct all sorts of dreadful images in our head and at least knowing what they are looking for usually is nowhere near as bad as what we can come up with ourselves. Keep us updated. Hugs Becki and 4systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 The idea of giving myself a shot would be kind of odd. At the same time though I sort of see it as me taking control over this disease. Anything to be able to be semi normal. I have senior activities in two weeks and I'm afraid I might not even get to really participate because of the flare I'm in (there's like a senior picnic at a water park, and a bunch of other activities we do before we graduate). Luckily I have the best friend in the world who's like its cool we'll go and watch anyway..and if you feel up to it we'll participate. I really wasn't worried about the whole MRI thing till my mom was like you were in there for a long time and they had to call in a doctor to order the contrast. I'm sure its nothing though. I go to a good hospital and I know they are very thorough which I appreciate. I have to make an appointment with my rheumi this week to get a change of meds.. so I'll see what happens. Hopefully something that makes this darn JRA go away. Poly JRA 18 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Dear Helen, I am so sorry that you and Nick had to go thru that. I get so tired of having a sick child and dealing with the medical profession. He is just another kid to them, so they don't care if he had to wait to get further upset. He is a little boy, and so now he gets traumatized by being held down against his will to get some blood. He feels bad, he has hives, and they probably won't find anything anyway. Our kids are so complicated, and I feel that half the time our kids are guinea pigs that the doctors are just learning of off. Each one of these systemic kids are different and are not textbook. Keep fighting for your child, and I hope he turns the corner soon. (n, 15, systemic) Back from the Doctors > > > I have such a headache...I worked a 12 hour shift last night, got > off at 5am and havent seen my bed yet! > > Thankfully I took pictures of Nicks hives before we left for the > doctors because by the time we saw the ped, they were fading and > hardly noticable. I took my digital along in case of something like > that and she was able to see them. > > She does think they are hives, but from what we dont know, they > could be post viral, mono, EBV, strep, sinus infection. But he > shouldnt have gotten hives because hes on prednisone?????? She took > a sinus film, a strep test and called his rheumy.. The rhuemy says > it sounds kind of unigue. She asked the ped to also draw extra labs > for her ( the usual sed, crp, liver functions etc)seeing as how she > was drawing labs anyways. > > This is where the whole appt went downhill... Nick is not feeling > the best, hes just getting over those high fevers and he decided > that he was NOT having labs. To compound the situation the labs got > a new computer system today and it took over 35 mins for them to get > the orders ready. Plenty of time for Nick to sit, stew and get > himself soo worked up that there was no reasoning with him. The lab > tech then came out and asked if he would sit nicely in a chair.. FAT > CHANCE, i told her.. I said the only way now, seeing as they kept > him waiting so long would be to pin him down...it took 3 of us > holding him down and blown veins on each arm to get the required > amount of blood. Nick than ripped off the gauze and band aid off and > blood kept squirting out. It was a nightmare... > > So we have no answers really... im just to watch him VERY closely, > treat with benadryl and wait for some of these labs and tests to > come back and see where we go from here.... > > IM so tired of all this.... > > Hugs Helen and (7,systemic) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Sorry to hear about Nick. I can sympathize with ALL the tests and feeling like my child is a guinea pig. Then is it possible that Mathieu can have chronic low-grade temps, diarrhea or problmes with bowel (possible IBD) an enlarged liver and spleen and just show a recent case of a rash, and not be diagnosed with arthritis yet? He is just now starting to play with is right wrist. (holding it and rubbing it) I am wondering if that is his indicaton that it hurts him. He doesn't cry about it specifically, but he will sometimes throw these raging fits. He has also always woken up at night screaming. Sometimes he settles with us in bed and sometimes my dear husband will pace the floor at night holding a screaming child lashing out in his arms..... Just curiousif this sounds familiar...He hasn't shown any evidence of inflammatory joints or any limping. Because he is only 21 months, he still hasn't chosen a hand to use. Some days he uses his left and some days he uses his right. I cannot wait until he gets older and he can describe exactly what is going on. Thanks Jay Mom to: 5 1/2 yrs old Mathieu 21 months old 22# 30 " Dear Helen, I am so sorry that you and Nick had to go thru that. I get so tired of having a sick child and dealing with the medical profession. He is just another kid to them, so they don't care if he had to wait to get further upset. He is a little boy, and so now he gets traumatized by being held down against his will to get some blood. He feels bad, he has hives, and they probably won't find anything anyway. Our kids are so complicated, and I feel that half the time our kids are guinea pigs that the doctors are just learning of off. Each one of these systemic kids are different and are not textbook. Keep fighting for your child, and I hope he turns the corner soon. (n, 15, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 -Jay,, its always hard to know whats going on with our kids when they are soo little and unable to tell us.. Not only that, it can take forever to get a dx. These months are the hardest and i totally understand your frustation. All you can really do is keep logging all thr symptoms you see each day and bring this to your appts. This will go a long way in helping the doctors give you a dx. good luck,... Hugs Helen and (7,systemic) -- In , " Jay Brethen " <jbrethen@s...> wrote: > > Sorry to hear about Nick. I can sympathize with ALL the tests and feeling > like my child is a guinea pig. > > Then is it possible that Mathieu can have chronic low-grade temps, diarrhea > or problmes with bowel (possible IBD) an enlarged liver and spleen and just > show a recent case of a rash, and not be diagnosed with arthritis yet? He > is just now starting to play with is right wrist. (holding it and rubbing > it) I am wondering if that is his indicaton that it hurts him. He doesn't > cry about it specifically, but he will sometimes throw these raging fits. > He has also always woken up at night screaming. Sometimes he settles with > us in bed and sometimes my dear husband will pace the floor at night holding > a screaming child lashing out in his arms..... > > Just curiousif this sounds familiar...He hasn't shown any evidence of > inflammatory joints or any limping. Because he is only 21 months, he still > hasn't chosen a hand to use. Some days he uses his left and some days he > uses his right. I cannot wait until he gets older and he can describe > exactly what is going on. > > > Thanks > > Jay > Mom to: > 5 1/2 yrs old > Mathieu 21 months old 22# 30 " > > > > > > > Dear Helen, I am so sorry that you and Nick had to go thru that. I get > so > tired of having a sick child and dealing with the medical profession. He > is > just another kid to them, so they don't care if he had to wait to get > further upset. He is a little boy, and so now he gets traumatized by > being > held down against his will to get some blood. He feels bad, he has hives, > and they probably won't find anything anyway. Our kids are so > complicated, > and I feel that half the time our kids are guinea pigs that the doctors > are > just learning of off. Each one of these systemic kids are different and > are > not textbook. Keep fighting for your child, and I hope he turns the > corner > soon. (n, 15, systemic) > > > > Quote Link to comment Share on other sites More sharing options...
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