morgan617 Posted August 21, 2008 Report Share Posted August 21, 2008 There are so many new people here, but for those of you who have been here awhile and know about Jake, he has been accepted at Oregon Health and Sciences for his hyperparathyroidism! I am trying not to get my hopes up too much, but as some of you know, we have had just as big a struggle getting help for him as for me, and they believe him!He has developed a fast pulse and lots of other POTS symptoms, but we KNOW he has a tumor on one or more parathyroids, which the doctors here think they should just "watch and wait and see how big they get" They argue whether he has malabsorption (he doesn't, his GI has tested) that leaves a tumor or tumors, for which his endo says so what.You have so many symptoms of this disorder that they are blaming on depression, even though his labs are off, he has osteopenia, tanchycardia, the testosterone levels of a 70 year old man (he is 26!) his hair is falling out, he is always light headed, because his pulse races at the slightest exertion and his BP dumps and just about everyone can relate to that one. Fatigue and brain fog. He may still have POTS, he definitely has arthritis and it won't help that, but it would help his calcium absorption. His level is 9 and should be greater than 30. It could help the tachycardia, BP, gut, testosterone levels, fatigue, weakness, brain fog, and the list goes on.Please keep your fingers and toes crossed that maybe, just maybe, while I continue to be completely blown off, that he won't....Good thoughts and prayers are happily accepted. morgan Quote Link to comment Share on other sites More sharing options...
mom4cem Posted August 21, 2008 Report Share Posted August 21, 2008 Glad to hear he is accepted and I hope they can help him. Look forward to hearing good news. In my thoughts Quote Link to comment Share on other sites More sharing options...
Ernie Posted August 21, 2008 Report Share Posted August 21, 2008 Hi,I am so glad and relieved that Jake god accepted. I will pray that everything goes well and that he gets the help he needs.Please keep us posted. Quote Link to comment Share on other sites More sharing options...
goldicedance Posted August 21, 2008 Report Share Posted August 21, 2008 Morgan, I sure your Jake gets the help he needs and deserves.Keep us posted.Lois Quote Link to comment Share on other sites More sharing options...
momofsara Posted August 22, 2008 Report Share Posted August 22, 2008 Great news, Morgan, Hope all goes well with the new doctors. Keep us posted. Thinking positive thoughts for you and for Jake. Susan Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted August 22, 2008 Report Share Posted August 22, 2008 That's really good news Morgan--I hope he starts feeling better once they start treating him for the parathyroid issues. One of my dear friends had thyroid surgery years and years ago where they accidentally removed her parathyroid glands--and the things it did to her were terrible. She had uncontrolled bp, heart arrythmias, and sometimes her blood calcium would be so bad she'd get lock jaw and her whole body would go into a spasms/stiffness from sound, from light, from touch. Thankfully, she had an awesome endocrinologist right from the start. I wouldn't doubt that your son's tumors are causing some of what is happening to his body.Nina Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 13, 2008 Author Report Share Posted September 13, 2008 just an udate. we got back from portland. jake got a great doctor...finally. he didn't want to say anything negative about the docs here, but made it clear that his care has been spotty, at best. he drew a gallon of blood and will be in contact with jake's pcp here, who is also great, so all was positive.except, i'm not certain i mentioned i broke my collarbone, a couple of ribs and cracked my shoulder blade, falling off a stupid chair. i can't rmember the last time i've had such pain. it was right side of course, and i am completely right handed. good grief. but the visit at ohsu was really great, we just have to wait for test results. morgantheklutz Quote Link to comment Share on other sites More sharing options...
momofsara Posted September 13, 2008 Report Share Posted September 13, 2008 OUCH--Morgan----- So sorry to hear of your accident, but also glad to hear of the hopefulness you and Jake are feeling right now. I sincerely hope he has found the right doctors to treat him and help him live life to the fullest. You take care of yourself now, and take your portable seat belt with you for those treacherous chairs......Hugs(gentle of course) and best wishes to you and Jake----Susan Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 13, 2008 Report Share Posted September 13, 2008 Hi Morgan,I am glad that your son had a good experience withe the doctors. Hope that your shoulder heals soon and well. Quote Link to comment Share on other sites More sharing options...
corina Posted September 14, 2008 Report Share Posted September 14, 2008 morgan,i am sorry i missed your first post on this, but i am very glad to hear that it seems that jake has found himself the right doctors and i hope he gets the care and attention he needs. but good things don?t come alone, do they they always bring "something" with them: hope your shoulder will heal soon and that the pain will be bearable (i don't think i spelled that right?!)sending warm wishes and healing thoughts,corina Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted September 14, 2008 Report Share Posted September 14, 2008 Hi! I am glad that he had such a positive dr visit and hopefully they soon will have more answers and help to offer!Your injuries sound painful and just annoying as well (because of being on the right)! Did you faint or was it purely a fall? I hope you feel better soon! Quote Link to comment Share on other sites More sharing options...
ken870 Posted September 14, 2008 Report Share Posted September 14, 2008 (edited) morgan i know just what your son is going through i have been sick for six years now and finally i seem to be getting help with my neuropathy and pots also i will be getting a tilt table test thursday and how will they diagnose me with the tilt table. Edited September 14, 2008 by MightyMouse removed quoted text Quote Link to comment Share on other sites More sharing options...
ken870 Posted September 17, 2008 Report Share Posted September 17, 2008 why is it a lot of doctors do not know anything about pots and i even called the american heart association and they said they did not know anything about pots. Quote Link to comment Share on other sites More sharing options...
ken870 Posted September 24, 2008 Report Share Posted September 24, 2008 morgan, how is your son doing now i hope he is doing better they are sending me to doctor dan dan who study under doctor grubb for treatment now. Quote Link to comment Share on other sites More sharing options...
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