Noreen Posted April 14, 2010 Report Share Posted April 14, 2010 I thought that when I was seen at the Movement Disorders Clinic for the cervical dystonia, that they had ruled out Parkinon's and was okayed to begin botox with the physiatrist . In the meantime, I had a follow-up appointment with my spine doctor and one of my really bad spasms occurred. Hey - at least a doctor saw it so now it is real - you know how that goes. He ordered an MRI. The physiatrist and the spinal surgeon rent space from my ortho surgeon. So I go into see the physiatrist's NP for an intake on the botox issue with the MRI - turns out the Movement disorders clinic hadn't yet released the office notes as they weren't signed and the MD was on vacation. The physiatrist and the spine surgeon come in - the spine surgeon says they didn't get everything on the MRI he wanted, the physiatrist says my presentation wasn't typical and he would not do the shots but would gladly send me back to the Movement Disorders Clinic. The spine surgeon sends me back for further views, the nurse practitioner has me come back at the end of the day. I end up with 3 Lidoderm patches a day.So, the Movement Disorder Clinic calls and tells me the MD has signed the notes and they faxed them to me. It turns out PD is not totally ruled out and they are also looking at Wilson's Disease as a possibility. I'm beginning to think I belong in a House episode.I go tomorrow to the spine doc to see what he wants to do about the bulging discs impinging on nerve roots at C5-6 and C6-7. The facet joint disease I can accept as part of the RA.To top all of that off, my Aspberger son pushed me yesterday and I had to have him hospitalized.So seriously, if you can spare the time, a good thought or two for strength would be much appreciated.Noreen Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 14, 2010 Report Share Posted April 14, 2010 Noreen,I'm so sorry to hear about your recent difficulties and the problems with your son. I'm sending you positive energy and praying for strength for you, and that you're surrounded by others who care and can give you emotional support. You have a lot of people on the Forum thinking of you and sending your their positive thoughts, too. Keep good thoughts in your mind, and keep you spirits up. Also remember - be good to YOU during this time!Best,Jana Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 14, 2010 Report Share Posted April 14, 2010 You bet, prayers sent! Please let us know how things turn out. Quote Link to comment Share on other sites More sharing options...
Maxine Posted April 14, 2010 Report Share Posted April 14, 2010 You're definately in my thoughts and prayers. Wow, you have a lot going on!I wish we had a "HOUSE" type doctor around.BIG HUG,Maxine :0) Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 14, 2010 Report Share Posted April 14, 2010 noreen,my thoughts and prayers are with you. i'm so sorry that you have so much going on right now. hang in there. you are not alone.xxx'slove,bellamia Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 14, 2010 Report Share Posted April 14, 2010 Noreen-Prayers are on the way! PD is frightening to consider at such a young age, but Wilson's disease would be a "good thing" as it's treatable- right? Isn't that when you have too much copper in your body? It WAS a House episode. How frustrating that you are getting info in dribs and drabs.I bet your son was feeling your stress and had a meltdown. I'm so sorry for you both. I know your heart must be broken. Take a good bit of reassurance in the fact that your MRI didn't clearly show PD. I hope your son is soon able to return home.Lot of Hugs & Prayers-Julie Quote Link to comment Share on other sites More sharing options...
summer Posted April 14, 2010 Report Share Posted April 14, 2010 Noreen: Prayers for you and your son going up from here too... wow, so much going on. I'm sorry that things are so hard right now. I hope you start getting some answers soon and that the news is good. Summer Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 17, 2010 Report Share Posted April 17, 2010 I'm sending good thoughts and prayers out to you and your son.Please hang in there as they figure out how best to help you. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted April 18, 2010 Report Share Posted April 18, 2010 Hi Noreen,I'll be keeping you in my thoughts. I'm sad for you about your son too. I have worked with kids on the spectrum for the past 24 years--sometimes their logic processes are "off" and it makes sense to them to do kinds of things like aggression. Nothing you don't already know, but I wanted you to know, I "get" it. If I can make you giggle for a moment, one of my 4th graders with Asperger's asked me the other day "Are you a dwarf?" I did have to laugh b/c I knew it was so completely innocent and within one minute of asking me if I do drugs You can't deny that there are funny moments too, yes? Sorry you're living through one of the sad and frustrating moments right now. I hope it passes and he learns from his experience that there are better choices to make than pushing.Nina Quote Link to comment Share on other sites More sharing options...
Noreen Posted April 21, 2010 Author Report Share Posted April 21, 2010 Thanks Julie, Summer, Tearose, Thankful, Bella, Jana, Maxine, and Nina for the support. I truly, truly appreciate it.The spine doctor and the psyiatrist are sending me to PT. fortunately, I have found a therapist who is hypermobile herself so she 'gets' it. I go 2 days a week for my neck and 2 days a week for my arm/wrist. I am using lidoderm patches on my neck in hopes of reducing overall med load. Everyone wants me back in 6 weeks which should bring me close to when I see the neuro who supposedly did autonomic work in his residency. so the three of them can work together. I see the neuro-opthalmologist next week and will have her send her reports along to them as well as to my rheumy.The rheumy's office called and said I am now positive for anti-phosolipid syndrome. Add that to the occluded carotid artery and I feel like a walking time bomb for stroke. Nothing like having 97 dx's saying reduce stress. I got the new Dean Ornish book Spectrum - it is a good book and logical - I can't follow what my cardio says as it makes no sense to me. I have to dump him after disability issues have been resolved.My son is being discharged tomorrow. Continued positive energy in that regard much appreciated. I finally found an exceptional therapist for Aspies but he missed the first group session Monday. Hopefully there will be progress in his being less rigid and less agoraphobic. I hold out no great hopes for a true therapeutic discharge plan - NY is horrible. Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 21, 2010 Report Share Posted April 21, 2010 Thanks Julie, Summer, Tearose, Thankful, Bella, Jana, Maxine, and Nina for the support. I truly, truly appreciate it.The spine doctor and the psyiatrist are sending me to PT. fortunately, I have found a therapist who is hypermobile herself so she 'gets' it. I go 2 days a week for my neck and 2 days a week for my arm/wrist. I am using lidoderm patches on my neck in hopes of reducing overall med load. Everyone wants me back in 6 weeks which should bring me close to when I see the neuro who supposedly did autonomic work in his residency. so the three of them can work together. I see the neuro-opthalmologist next week and will have her send her reports along to them as well as to my rheumy.The rheumy's office called and said I am now positive for anti-phosolipid syndrome. Add that to the occluded carotid artery and I feel like a walking time bomb for stroke. Nothing like having 97 dx's saying reduce stress. I got the new Dean Ornish book Spectrum - it is a good book and logical - I can't follow what my cardio says as it makes no sense to me. I have to dump him after disability issues have been resolved.My son is being discharged tomorrow. Continued positive energy in that regard much appreciated. I finally found an exceptional therapist for Aspies but he missed the first group session Monday. Hopefully there will be progress in his being less rigid and less agoraphobic. I hold out no great hopes for a true therapeutic discharge plan - NY is horrible.Oh Reen,So much on your plate! I hope they've started you on some sort of blood thinner, even aspirin. With your hypermobility, I wonder about some form of connective tissue disease, esp. with the new test results. One of my brothers (with dysautonomia) had his carotid artery dissect. He wasn't as lucky as you to have the prior tests as a warning. But, he is fine, great docs, etc. Our docs did test us for EDS, type IV as another brother had an aortic aneurysm. We don't have it, but I am certain that there is some connection... Your dehydrated state doesn't help with your thickened blood. Try to drink as much as you can. I hope you get more definitive answers soon. Your PT sounds great!One thought about your son. Could he be exhibiting some symptoms of dysautonomia? I ask because my son appeared to be suffering from agoraphobia when he first became ill. He sense his BP was going to drop & adrenaline coursed though his body. Out of the blue, he was so anxious. He never wanted to leave the house. I know you know him the best. This could most certainly be his Aspberger's flaring, but I wonder...You are both in my thoughts and prayers. I know your docs are getting to the heart of your issues. Better days are ahead.Hugs-Julie Quote Link to comment Share on other sites More sharing options...
Shimoda Posted April 21, 2010 Report Share Posted April 21, 2010 Don't know if this still helps, but I'm thinking of you. I'm sorry to hear about your son and about the anti-phosipilid syndrome. Hopefully your son is doing much better.All the good vibes I can summon are headed your way. - Shim Quote Link to comment Share on other sites More sharing options...
Noreen Posted April 21, 2010 Author Report Share Posted April 21, 2010 Oh Reen,So much on your plate! I hope they've started you on some sort of blood thinner, even aspirin. With your hypermobility, I wonder about some form of connective tissue disease, esp. with the new test results. One of my brothers (with dysautonomia) had his carotid artery dissect. He wasn't as lucky as you to have the prior tests as a warning. But, he is fine, great docs, etc. Our docs did test us for EDS, type IV as another brother had an aortic aneurysm. We don't have it, but I am certain that there is some connection... Your dehydrated state doesn't help with your thickened blood. Try to drink as much as you can. I hope you get more definitive answers soon. Your PT sounds great!One thought about your son. Could he be exhibiting some symptoms of dysautonomia? I ask because my son appeared to be suffering from agoraphobia when he first became ill. He sense his BP was going to drop & adrenaline coursed though his body. Out of the blue, he was so anxious. He never wanted to leave the house. I know you know him the best. This could most certainly be his Aspberger's flaring, but I wonder...You are both in my thoughts and prayers. I know your docs are getting to the heart of your issues. Better days are ahead.Hugs-JulieJulie-I am on baby aspirin and still on the plaquenil right now for the APS. I am considering going to Fletcher Allen in Vermont as they have a geneticist with experience with Marfan so regular EDS should be a piece of cake. I originally started looking at it following docs from the Autonomic society of America list so I am hoping if I can get my ducks in a row to go there and shoot them both. An interesting side note is that Fletcher Allen's instructions to referring neuro's say to obtain the test for copper, as in Wilson's. It is 3 hours away and Burlington won't have the noise and stress of NYC. Can't handle noise - when my husband got home with my son at lunch, he knocked down a magnetic rack on my refrigerator and I fell down due to the noise. I was dehydrated and had been up doing more since I had the house to myself but still - I just can't imagine travelling to Manhattan at this point.I had the same concerns about my son but right now am unsure how to proceed. I actually did not know he was hypermobile until a couple months ago - lack of coordination is always a hallmark with Aspies and I could never get OT approved. They all want the train wreck not the warning when the light is coming down the tunnel. What makes it extremely difficult is he cannot identify his feelings as much as he think he can and sorting through what is what is challenging.Oh well.. sufficient unto the day...Thanks and hugs back at you,Noreen Quote Link to comment Share on other sites More sharing options...
Noreen Posted April 21, 2010 Author Report Share Posted April 21, 2010 Don't know if this still helps, but I'm thinking of you. I'm sorry to hear about your son and about the anti-phosipilid syndrome. Hopefully your son is doing much better.All the good vibes I can summon are headed your way. - ShimThanks Shim Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 22, 2010 Report Share Posted April 22, 2010 "Julie-I am on baby aspirin and still on the plaquenil right now for the APS. I am considering going to Fletcher Allen in Vermont as they have a geneticist with experience with Marfan so regular EDS should be a piece of cake. I originally started looking at it following docs from the Autonomic society of America list so I am hoping if I can get my ducks in a row to go there and shoot them both. An interesting side note is that Fletcher Allen's instructions to referring neuro's say to obtain the test for copper, as in Wilson's. It is 3 hours away and Burlington won't have the noise and stress of NYC. Can't handle noise - when my husband got home with my son at lunch, he knocked down a magnetic rack on my refrigerator and I fell down due to the noise. I was dehydrated and had been up doing more since I had the house to myself but still - I just can't imagine travelling to Manhattan at this point.I had the same concerns about my son but right now am unsure how to proceed. I actually did not know he was hypermobile until a couple months ago - lack of coordination is always a hallmark with Aspies and I could never get OT approved. They all want the train wreck not the warning when the light is coming down the tunnel. What makes it extremely difficult is he cannot identify his feelings as much as he think he can and sorting through what is what is challenging.Oh well.. sufficient unto the day...Thanks and hugs back at you,Noreen"____________________________Reen-So happy you are checking out the connective tissue aspect. You sound very on top of that- I totally get what you mean about the travel. I didn't get my DX until I was much better (years later), then had the energy to unravel WHAT had happened in an effort to prevent it from happening again. I also know what you mean about your son having trouble verbalizing what exactly is wrong. I KNOW some of that is Aspberger's and some is just being a teen-age boy. My son grunts more than he talks these days (17 y/o.) When he was first sick, he had to say words like "lightheaded" and "I'm going to faint" before I started to understand it was more than GI woes. You know about the hypermobility part. Look for fatigue, anxiety, lying down A LOT, aches & Pains, etc. I'm sending prayers your way for healing and answers for both of you.Julie Quote Link to comment Share on other sites More sharing options...
summer Posted April 22, 2010 Report Share Posted April 22, 2010 Reen,Hope things are going ok since your son got home. ....Still praying for you both.....Summer Quote Link to comment Share on other sites More sharing options...
Noreen Posted April 23, 2010 Author Report Share Posted April 23, 2010 Thanks Julie and Summer-Today's visit was with the rehab doc's NP for the wrist injury. Apparently I had forgotten that they had asked for permission to do a bone scan for further evaluation of RSD. No answer from the insurance carrier so something else to follow up with the attorney tomorrow. This afternoon's PT was not with the therapist I have been having luck with - the hypermobile one. My arm is numb and extremely painful. I have to grow an assertive backbone tomorrow when I see my usual one for the neck to tell her I can't tolerate the other one doing any therapy on my wrist/arm.My son's med changes seem to be helpino. He followed the schedule today and went to school and then to his new therapist. I came up with a phrase the therapist loved and our goal is now to 'Avoid the Toxic Vortex' .So all the positive vibes are definitely helping and believe me, I am grateful beyond words for the support.Noreen Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 24, 2010 Report Share Posted April 24, 2010 Just wanted to check in and send you more healing thoughts, love and support!The way to "get" that proactive-assertive-backbone is to realize you are WORTH the extra time it takes to get the answers and assistance you need! You just have to speak in a strong voice that kindly but firmly speaks up for yourself!! You must because no body else can!!! I also hope your son continues to improve and you are able to breathe a little more easy with each milestone he reaches.healing wishes,tearose Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 24, 2010 Report Share Posted April 24, 2010 Noreen,I'm also checking in and wanting to let you know I'm thinking of you and sending lots of love and good energy your way!I know it's not easy when we have a child that is not well. Tearose is right , you must because no body else can!!!May you both continue to heal.Blessings and Love,Bellamia~* Quote Link to comment Share on other sites More sharing options...
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