morgan617 Posted June 3, 2008 Report Share Posted June 3, 2008 I am not sure what's happening here , but I sent a question to the periodic paralysis assoc doctors in a segment called "ask the experts." It said I needed to be patient, as they had lots of emails.The next day, yes that's what I said, the very next day, I got a response from the MEDICAL DIRECTOR, himself, stating he wanted to talk to my doctor and contact him, not the other way around.I know only a few of us have PP here, but it reeks havoc with the autonomic system, I have told many PP people on that forum to visit us here and see how well they fit in. So most of you won't know about periodic paralysis, but I was shocked. I have been having somewhat of a rough time with my primary, mainly because he's so frustrated that neither he nor I can get any help for me.I called his office and asked if it was okay for this PP doctor to call and they said, it would be wonderful, if it would only happen! They were as dubious as me. He has called mayo, Vandy, NIH, you name it, and never even gets the courtesy of a response, even though he leaves every number to reach him, including his home phone.So I emailed Dr. L in New York on Thursday afternoon, told him my doctor had Fridays off, but would would really appreciate hearing from him. He called him TODAY! I got an email from the PP doc telling me he had discussed my case with my doctor at 1 pm and my doctor would stay in close contact with him! They both believe I have a type that affects the heart. So while I am a bit nervous about seeing my doctor, because he wasn't specific about the conversation, I am also anxious to see if there is a plan in place when I go.So, now two times, things have happened like I prayed they would. My appointment is June 10th, so it will be very interesting to see what happens, but this is the very first time any doctor has made any effort to contact my doctor and help me in any way. Some of the oldies here know how hard I have tried in the past to get help...so this is a huge milestone for my doctor and me...please keep good thoughts and for those that pray, maybe a little one that my visit goes well, and that I might finally get a bit of relief.I have gotten so weak, I can not get up off the floor any more. I have to be picked up, as my legs and arms have grown so weak. I will hope it is not permanent and then I can write more too. Thanks for listening! hopeful and in shock for the second time morgan Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted June 3, 2008 Report Share Posted June 3, 2008 Morgan, "Zowee" havn't heard that in awhile. Some time the stars align and it is good. I have a letter to get to tou. I am in Honolulu,, being a grandma. My husband came a week after me and I havn't been so grateful. These kids wake up at 6AM.... My husband is an early riser. I don't know what I'll do after he goes home.You will be in my thoughts and praers. Its your turn lady. Miriam Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted June 3, 2008 Report Share Posted June 3, 2008 Wow Morgan...that's sure is amazing. Reminds me that there really still are great doctors out there. I only wish there were more of them!Nina Quote Link to comment Share on other sites More sharing options...
flop Posted June 3, 2008 Report Share Posted June 3, 2008 Nina beat me to what I had been going to say. It is wonderful that there is a doctor out there who takes time to be involved in a patient service answering questions and then takes a personal interest in a complex patient. For them to follow it up by actually speaking to your doctor so promptly is amazing!!! I hope that having input from this expert helps your PCP take better care of you. Let us know how your appointment goes on the 10th.Thinking of you,Flop Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted June 3, 2008 Report Share Posted June 3, 2008 How incredibly super! I am so glad you keep trying morgan! You have a strong desire to find someone to help you and you are about to see if this new doctor has any answers. I am so excited for you! Yes, prayers and good thoughts are going your way!!best regards, tearose Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 3, 2008 Report Share Posted June 3, 2008 My Dear Morgan,There is no words to say how happy I am for you that you have finally found a doctor who is interested in your care and is actually doing something to help you.I will pray for you and I surely hope that your body can reverse the damage and heal itself.LoveErnie Quote Link to comment Share on other sites More sharing options...
Rachel Posted June 3, 2008 Report Share Posted June 3, 2008 Wow! That's wonderful! I double checked to make sure that this was indeed Morgan posting, and that I hadn't read the name wrong. I'm so happy for you. I pray that your appointment goes well. Do let us know!!!Rachel Quote Link to comment Share on other sites More sharing options...
maryfw Posted June 3, 2008 Report Share Posted June 3, 2008 This is my first time meeting you and I am very moved by you and your story. I will definitely pray for you that things continue to go well with the doctors and a plan is put in place that will help you. A new friend,mary Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted June 3, 2008 Report Share Posted June 3, 2008 MorganI was very happy to hear a doctor acted so quickly to get you an appt. I hope and pray all goes well as you have been going downhill for way too long.I hope some meds/supplements can restore muscle strength for you. I can't imagine dealing with PP as it sounds like something out of a science fiction movie.This little critter is sending you good wishes, too....snapped this one last week Quote Link to comment Share on other sites More sharing options...
Maxine Posted June 3, 2008 Report Share Posted June 3, 2008 Morgan,So great to hear you had another good experience. I will certainly pray your appointment goes well on the 10th.Hopefully they can put their heads together and get a treatment plan together for you.I know you have had your share of bad experiences with really ignorant medical professionals, and it's about time you get a reprieve from the constant disappointments.Hope is a good thing.Maxine :0) Quote Link to comment Share on other sites More sharing options...
momofsara Posted June 3, 2008 Report Share Posted June 3, 2008 Only one word describes my reaction-----HOORAY!!!!!!!! Keep us posted we are all pulling for you. Susan Quote Link to comment Share on other sites More sharing options...
pat57 Posted June 4, 2008 Report Share Posted June 4, 2008 I will ditto momofsara HOORAY!!! Quote Link to comment Share on other sites More sharing options...
sandymbme Posted June 4, 2008 Report Share Posted June 4, 2008 Morgan- I've read so many funny but frustrating posts from you, I am OVERJOYED to hear one of hope!!!! I sincerely hope that this new doc brings you the relief you so richly deserve! Quote Link to comment Share on other sites More sharing options...
morgan617 Posted June 4, 2008 Author Report Share Posted June 4, 2008 Thanks everyone...I will keep you informed of what happens. Dan once said all he ever wanted was a doctor who understood me to call and tell him what to do for me. Now hopefully the booger meant it! I have started paralyzing again and it really weirds my heart out. We went for a ride on Sunday and Dave asked me if I was up to looking at an open house. That's our hobby, looking at things we can't ever have, to make us feel better... I said I thought so. There was a time I could go through houses all afternoon, but no more.We no sooner got into it when I knew I was in big trouble. I was already losing my speech, I turned to tell Dave to get me out of there, there were a lot of people, and he wasn't getting me, just standing in my way like a lummox. Finally, he said oh **** and helped me out. It had started to rain and he was basically dragging me to the car in his socks and had to go back and get his shoes, and then it was pouring rain.He took off around the block so people couldn't see. I had taken some meds out of my purse, but couldn't get my hand up to my mouth, and they fell out. So he pulls over to a curb and reclines me back, because sitting with this makes my heart go crazy and I can't breath very well. So there I am, limp as a rag, with the pills having fallen between my buttocks, only in the front, and he is digging there, trying to find them for me, and as my eyes are wandering aimlessly, I notice there's a guy in the yard of the curb he stopped at watching us. I can't make any expressions during these attacks, but I have to tell you that guy sure was. It flitted through my brain that the police were going to show up at any moment and then I wanted to burst out laughing, except I can't.Dave looks up and sees the guy seeing him and says that word again and I am silently busting a gut. It would be really nice to go in on the tenth and get something that prevents guys in their yards from thinking I am being violated at their curb by a frantic looking middle aged nerdy guy....... maybe you had to be there .....but yust use your imagination.....it was pretty funny, even then. Not the paralysis, everything surrounding it. It would just be nice to go to an open house and not wonder if I'm going to do a face plant show for people....so I will keep my fingers crossed. And maybe my legs morgan Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 4, 2008 Report Share Posted June 4, 2008 Morgan,This is so dramatic but the way you are telling it made me laught my head off. I could just imagine the whole scene.I wish you the best of luck with your appointment. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted June 4, 2008 Report Share Posted June 4, 2008 Well, you sure do keep Dave's life "interesting" Quote Link to comment Share on other sites More sharing options...
Eillyre Posted June 4, 2008 Report Share Posted June 4, 2008 That's wonderful news, Morgan! I'm so glad you've finally found someone who takes an active interest in your case.I love the open house drama! I've had plenty of quirky stares from spectators at hospitals, airports, etc. but yours definitely takes the cake! Angela Quote Link to comment Share on other sites More sharing options...
P SUDIK Posted June 4, 2008 Report Share Posted June 4, 2008 Wonderful news Morgan,Lots of luck Pat Quote Link to comment Share on other sites More sharing options...
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