Guest guest Posted July 30, 2005 Report Share Posted July 30, 2005 Hi RH, I am so sorry to hear that this happened to you. I would be livid, too. That's really pretty unacceptable. You should contact the nurse, Maggie, who spoke with you several months ago and tell her that you're really upset about this. The fact that you called several months ago and are now being moved BEHIND all the people who called after you is not right. I did know that he canceled someone else who had an appt. on August 15th but didn't know he wasn't going to be there the week before, too. If you need to be seen, then you need to emphasize that with his staff, telling them what you just described about booking your hotel and your husband taking a day off from work. Maybe you won't be seen on the 8th but maybe they can fit you in later in the month. He does have certain time slots that are used for things like this. Please keep me updated. Again, I'm sorry that this happened. If you're really considering someone locally, maybe CHOP or DuPont's metabolics clinics would be okay for the time being. DuPont has a good metabolics doc, but I'm not sure if she sees adults. I did hear good things about Dr Kaplan at CHOP recently. Maybe you could keep your appt with Dr K for Oct but start with her and see if you like her. Malisa Re: RH-appointment I was debating mentioning this, but... My August 8th appointment was CANCELLED yesterday, seems they first knew about the error last week, but the person who contacted from NEMC on another issue never told me about it (and she had me go through the trouble of refaxing a bunch of info earlier in the week). I'm now on the waiting list and scheduled for Oct. 31st! I am livid, as I waited until this week to schedule hotel and plan my trip, just in case. My husband also told his boss that he needed to take a day off for personal reasons. I was told that Dr. Korson had told the scheduling people to " block out " the week of August 8th and August 15th, way back when, and they didn't. So he started going through the charts for the week of the 8th, and realized that he'll be out that and the following week. I called the MDA clinic and asked them if they can refer me to another metabolic specialist, more local hopefully - at this point, I really need to see someone as my ammonia issues are a daily battle and I need help from someone to explore the possibility of a UCD. I was going to email Malisa about whether she knew that Dr. K would be off for two weeks in August, but since she's been in the hospital, I didn't want to bother her about it... The thing is, Dr. H-P cancelled her Monday MDA clinic appointments because of a meeting one time, and she made arrangements to work extra so people could be seen within a week or two. I can't imagine how many people are upset about their appointments being cancelled, two whole weeks of appointments! I wonder if I should see the other doctor in the NEMC metabolic clinic instead (they didn't ask me about that on the phone). Take care, RH > Hi RH, > Did you have your appointment in Boston yet? I would like to hear about it if you did. I am home now, > > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2005 Report Share Posted July 30, 2005 In a situation like this there isn't much a person can say to try to console you so my suggestion is " as my son would say when he was young " tell everyone to cover up their ears because you are getting ready to say a bad word! I really think a situation like this would have made my Great-uncle Grover Vice, who was a Nazarene minister, cuss on Sunday. There is absolutely no excuse for situations like that, at times it seems that the medical profession is going downhill fast. I perhaps am adding fuel to the fire but I think I would go to the head of the clinic or etc concerning this. I can just imagine how upset you are and with very good reason. I know I am much older and I should say, " Oh well, it was just one of those things " , but that isn't my opinion and I don't blame you one bit for being upset, disapointed and downright mad about it! I hope they can get this straightened out for you and get you in sooner. Good Luck and God Bless, Dolores ohgminion rakshasis@...> wrote:I was debating mentioning this, but... My August 8th appointment was CANCELLED yesterday, seems they first knew about the error last week, but the person who contacted from NEMC on another issue never told me about it (and she had me go through the trouble of refaxing a bunch of info earlier in the week). I'm now on the waiting list and scheduled for Oct. 31st! I am livid, as I waited until this week to schedule hotel and plan my trip, just in case. My husband also told his boss that he needed to take a day off for personal reasons. I was told that Dr. Korson had told the scheduling people to " block out " the week of August 8th and August 15th, way back when, and they didn't. So he started going through the charts for the week of the 8th, and realized that he'll be out that and the following week. I called the MDA clinic and asked them if they can refer me to another metabolic specialist, more local hopefully - at this point, I really need to see someone as my ammonia issues are a daily battle and I need help from someone to explore the possibility of a UCD. I was going to email Malisa about whether she knew that Dr. K would be off for two weeks in August, but since she's been in the hospital, I didn't want to bother her about it... The thing is, Dr. H-P cancelled her Monday MDA clinic appointments because of a meeting one time, and she made arrangements to work extra so people could be seen within a week or two. I can't imagine how many people are upset about their appointments being cancelled, two whole weeks of appointments! I wonder if I should see the other doctor in the NEMC metabolic clinic instead (they didn't ask me about that on the phone). Take care, RH > Hi RH, > Did you have your appointment in Boston yet? I would like to hear about it if you did. I am home now, > > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2005 Report Share Posted July 31, 2005 Hey, good saying! Take care, have fun and God Bless!! Dolores ohgminion rakshasis@...> wrote:I'm trying to go away for the weekend before the cancelled appointment (next weekend), as we had planned to do some things for the kids, like go to the Boston Aquarium, the zoo, and a boardwalk with games like skee ball. It will be too much to sit home and think about it. My dad says " Illegitimus non carborundum " - " don't let the b*stards wear you down " . I'm not saying anyone is at fault, or anything was done on purpose on NEMC's end, but the fact it was cancelled and at such short notice is a b*stard in itself. Take care, RH > > Hi RH, > > Did you have your appointment in Boston yet? I would like to hear > about it if you did. I am home now, > > > > Thanks, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2005 Report Share Posted July 31, 2005 RH, I am so sorry that your appointment has been canceled. I know how much you were looking forward to seeing Dr. Korson and to try to get your ammonia levels under control. It is so aggravating and upsetting mentally. You get yourself all settled and ready both emotionally and mentally for the appointment and dealing with this disease and than you get it right between the eyes and you never saw it coming. I have to agree with Malisa and that is to call Maggie and talk to them and let them know just how important it is that you see him and sooner than Oct. This canceling thing has happened before. The time this happened was when he didn't have a permanent secretary, he had temporary ones filling in until he found a permanent one. And I just went through a heck of a mess with the higher ups at NEMC over my J tube surgery, so I what you are going through. I wish I had a magic wand and could wave it around and give you your appointment back again. If I were you, I would keep my Oct appt. with him but I would also keep looking for a local metabolic doctor to help you out now. Nothing wrong with seeing another metabolic doctor for a consult and see what he has to offer you and then compare the two appointments and see what road you want to travel down. Once again I am so sorry about your appointment getting canceled. I would call and ask them to put you on the waiting list in case someone has to cancel. That way you may get an earlier appt. Your family may not be able to go with you if it is short notice, but at least you can get up there to see him earlier, maybe.. just a thought. Hugs, Ann-Marie At 11:23 AM 7/30/2005, you wrote: >I was debating mentioning this, but... > >My August 8th appointment was CANCELLED yesterday, seems they first >knew about the error last week, but the person who contacted from NEMC >on another issue never told me about it (and she had me go through the >trouble of refaxing a bunch of info earlier in the week). > >I'm now on the waiting list and scheduled for Oct. 31st! I am livid, >as I waited until this week to schedule hotel and plan my trip, just in >case. My husband also told his boss that he needed to take a day off >for personal reasons. > >I was told that Dr. Korson had told the scheduling people to " block >out " the week of August 8th and August 15th, way back when, and they >didn't. So he started going through the charts for the week of the >8th, and realized that he'll be out that and the following week. > >I called the MDA clinic and asked them if they can refer me to another >metabolic specialist, more local hopefully - at this point, I really >need to see someone as my ammonia issues are a daily battle and I need >help from someone to explore the possibility of a UCD. > >I was going to email Malisa about whether she knew that Dr. K would be >off for two weeks in August, but since she's been in the hospital, I >didn't want to bother her about it... > >The thing is, Dr. H-P cancelled her Monday MDA clinic appointments >because of a meeting one time, and she made arrangements to work extra >so people could be seen within a week or two. I can't imagine how many >people are upset about their appointments being cancelled, two whole >weeks of appointments! > >I wonder if I should see the other doctor in the NEMC metabolic clinic >instead (they didn't ask me about that on the phone). > >Take care, >RH > > > > Hi RH, > > Did you have your appointment in Boston yet? I would like to hear >about it if you did. I am home now, > > > > Thanks, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2005 Report Share Posted July 31, 2005 If it hadn't been for a mild stroke, a " silent seizure " where I lost over two hours in time and a light heart attack, the MDA clinic at KU would still be refusing referrals my current neurologist sent them and I still would be " hanging in the wings " . It was a " heck of an ordeal " but I will be hearing from them about an appt sometime (?) but at least I know I will be hearing something. I just hope they can come up with a definitive diagnosis? God Bless, Dolores Drotos rdrotos@...> wrote:More than two years ago I had a neuromuscular specialist (Dr. Tarnopolsky from McMaster Univerisity Medical Centre in Hamilton, Canada) who brought me in 3 times for muscle biopsy ... all three times, emergencies and tragedies meant that I waited all day and then went home. He then essentially told me that since it was apparent that they would not be able to get an appointment, and that it was increasingly unlikely that he would be able to fit me in (there was a huge expansion in the children's hospital, and *way* more patients as time went on and certainly not enough doctors) he would have to refer me back to my rheumatologist for followup. He said " you have neuromuscular disease as the dominant factor in your condition, but my situation is that I am swamped dealing with children with treatable and/or life threatening situations, and we are going to have to focus on that with the resources we have " . I can hardly argue with that. My PCP actually thought that the biopsy had been done (misread the material sent by Tarnopolsky) and that it had been negative, and when i saw the rheumatologist he had a note from the primary care doc that it had been done and was negative. They apologized very nicely. Soooo ... here i am nearly 3 years later and the rhueumatologist is saying he should arrange for a biopsy. Sound familiar? All along the way i have to explain that firm diagnosis *does* matter, without it i cannot get advice and help from the Canadian Muscular Dystrophy Foundation etc. And, they give zero advice when it comes to practical issues, like what kind of exercise to do, " how much is too much " etc. ah well, onward and upward -- *********************************************************** Kelta Vineyard __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2005 Report Share Posted July 31, 2005 Oh I am so sorry this happened. I know how disappointed you must be, and frustrated.....to say the least! I know that Dr. O'Neil at Mass General sees Mito patients too, if you want to consider him, although he might not be as experienced as Dr. Korson seems to be. But he is a very intelligent and caring man. He is my neuro-muscular doctor. I have had nothing but wonderful things to say about my appointments, but another fellow on here has not had the same experience. If it is any consulation, I do beleive the price of the hotels in Boston drop considerably after Sept. Please keep me informed, Thanks, Re: RH-appointment > I was debating mentioning this, but... > > My August 8th appointment was CANCELLED yesterday, seems they first > knew about the error last week, but the person who contacted from NEMC > on another issue never told me about it (and she had me go through the > trouble of refaxing a bunch of info earlier in the week). > > I'm now on the waiting list and scheduled for Oct. 31st! I am livid, > as I waited until this week to schedule hotel and plan my trip, just in > case. My husband also told his boss that he needed to take a day off > for personal reasons. > > I was told that Dr. Korson had told the scheduling people to " block > out " the week of August 8th and August 15th, way back when, and they > didn't. So he started going through the charts for the week of the > 8th, and realized that he'll be out that and the following week. > > I called the MDA clinic and asked them if they can refer me to another > metabolic specialist, more local hopefully - at this point, I really > need to see someone as my ammonia issues are a daily battle and I need > help from someone to explore the possibility of a UCD. > > I was going to email Malisa about whether she knew that Dr. K would be > off for two weeks in August, but since she's been in the hospital, I > didn't want to bother her about it... > > The thing is, Dr. H-P cancelled her Monday MDA clinic appointments > because of a meeting one time, and she made arrangements to work extra > so people could be seen within a week or two. I can't imagine how many > people are upset about their appointments being cancelled, two whole > weeks of appointments! > > I wonder if I should see the other doctor in the NEMC metabolic clinic > instead (they didn't ask me about that on the phone). > > Take care, > RH > > > > Hi RH, > > Did you have your appointment in Boston yet? I would like to hear > about it if you did. I am home now, > > > > Thanks, > > > > > > Quote Link to comment Share on other sites More sharing options...
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