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blackdog

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  1. I thought maybe you could all help answer this question. My son has be bedridden for 2 years now with unclassifible dysautonomia. He can be on exactly the same meds for weeks at a time, but his bodys reaction to the meds can be drastically different from day to day. Does anybody else find this? It makes it pretty difficult to work out what's going on!! Thanks
  2. Just realised i wrote 4cms instead of 4mm, that would be amazing!
  3. Thanks Firewoman for your reply. Wow, I think you you certainly remember passing something 4cms Lol This is actually the 5th or 6th second opinion, if you know what I mean. As with most people on this site, it took a long time for him to be diagnosed with dysautonomia. We were all getting used to what that means, long term, and then to be told that it is perhaps something different entirely. It sort of makes it hard for the whole family to cope. He's scheduled in go into hospital on the 10th Sept for the MIBG and the MRI, so I'll guess it might get to the bottom of it.
  4. When my son was in hospital last time, his gastroenterologist was trying to sort out some absorption issues to do with Mitch's J tube and decided to do a CT scan. This was about the one millionth test he's had, so everyone was very surprised when it showed a 2cm lump near his adrenal gland. He suddenly became very symptomatic 18 months ago following a sympathectomy for knee pain and has been bed- ridden all this time. His dr's are now testing for phaeochromocytoma and even though the 1st round of urine catecholamine levels were normal and had just small increased levels of gastrin and cortisol, they still are going to do a MRI and MIBG scans. We are still waiting on plasma results. I?m only guessing, but they must feel the CT findings and the symptoms warrant serious investigating. His symptoms just don?t seem to ?fit ?anywhere. His Neurologist describes him non classifiable and so far, no medication has made the slightest improvement, so we are welcoming any light shed on this. He has just turned 20 and missing out on so much! I?m interested to know if anybody else has had a similar experience. Thanks.
  5. Hey Angela, I'm glad you?re getting good results from the baclofen. They often give it to people with cerebral palsy because it helps with the spasticity in their muscles. My son has tried it for this purpose and unfortunately couldn't tolerate it. He now he has severe gastroparesis (and is fed through a J tube) but maybe it could have helped. Rob
  6. Can someone explain what a compounding pharmacy is? Also what do mean compounding your meds? Sorry if I seem a bit thick but I've never heard that term used in Australia. Lol
  7. Thanks for the tips and advice. Lois, thanks for the welcome and the encouraging words. You?re right about the bumps along the way, sometimes hour to hour makes a huge difference to how he?s feeling and you?ve just got to roll with the punches. Doctorquest - you were right on the money. He had the sympathectomy in the first place to control reflex sympathetic dystrophy on his kneecap following a hamstring release. Interesting he doesn't have POTS but he does have lots of autonomic symptoms such as flushing, excessive sweating, migraine, gastroparesis, J tube, extreme facial nerve pain, dizziness, etc etc but his BP isn't unstable enough to have POTS (so we?re told). Over the last 6 months he has tried really hard to get up for as long as he can tolerate everyday (usually only 20 - 30 mins) but it isn't getting any easier and he isn't feeling any better for doing it. Usually it takes the rest of the day to recover and he's losing motivation. Rob
  8. Hi everyone, I'm new to the forum but wanted your insight. I'm the mum of a great 19 year old son with dysautonomia. He also happens to have cerebral palsy. I can honestly tell you that the CP pales in comparison to the dysautonomia. The dysautonomia has been so debilitating that he has been bedridden for the last 16 months. What I really wanted to know was if anybody else has dysautonomia as a direct result of a lumbar sympathectomy? Or even if anybody has heard of this. Mitch was in great health prior to the day he had the sympathectomy and then *BANG* that evening this nightmare started. His Neuro say that his form of dysautonomia is rare and unclassifiable, what ever that means! We live in Australia and due to our relatively small population I don't think Drs see this very often. Thanks Rob
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