Guest guest Posted July 30, 2005 Report Share Posted July 30, 2005 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 Thanks, Malisa, so happy you're online again. I have a call in to Dr. H-P about a local metabolics doctor, I would go to CHOP if I could. Regarding the " complaints " , I was talking to Carlita about them (I tried not to sound as upset as I was, maybe that was a bad idea?), and she was nice but essentially just said " sorry " twice. It even sounds like Dr. K was the one to remind them to " make sure she cancels her hotel and travel plans, let me know if she has trouble " , which of course means that I should have been told earlier at some point. I will call Maggie I guess, although I think that I was talking to Margaret, a different person? I really need someone local at this point, but yes, I'm keeping the October appointment with Dr. Korson unless something changes. I figure that the worse that will happen is that I'll have to cancel, and someone will get an earlier appointment than they expected... I don't know if this has anything to do with me being a new patient, that is, having to see him for a longer appointment so it has to be October. Again, thanks for the thoughts and at least I know I should be upset. Luckily, last night was a babysitting night for our daycare, they watched the kids from 6:30 pm to 11 pm, and me and my husband got to spend a nice dinner not thinking about the screw-up... At the town MDA, twice I've been rescheduled, but both times it was within a week of the original appointment, and with a month's notice (which they were apologizing for profusely). They also offered to talk to the doctor about finding another appointment close to the cancelled one if the times they had weren't okay. I swear, I feel like the people at Dr. K's must have high ammonia too! All of us with cognitive symptoms know it's difficult to keep track of our own thoughts, without this kind of crap happening (10 days notice of an appointment cancellation, with an almost 3 month delay in rescheduling). Enough venting for now... 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 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 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 I was debating going to visit Dr. Tarnopolsky, since I have a strong metabolic element to my symptoms (I can do high-intensity exercise, but not light-intensity exercise). I ended up going to Georgia instead (1,000 miles to Atlanta vs. 400 miles to Hamilton for me), and got the muscle biopsy done within a few months, including full insurance coverage. That's why I was looking at Dr. Korson, to pursue metabolic issues, but as you've seen, it seems that having a local specialist to go to sometimes is better than going to a more distant or just too busy " world-renowned " specialist you can't get to see. I compare it to my current job search - I could get twice as much money at an entry-level pharma job than at an academic job, but there are no industry jobs available for my speciality right now, so I've just got to focus on what's available. I would rather get experience than wait unemployed for the perfect, high-paying job. I do feel a bit " guilty " that my condition doesn't appear to be life- threatening at the moment and I am seeking the help of " world- renowned " specialists, and I know there are a lot of kids (and adults) who have much more severe symptoms than I do. But I also know that the blood ammonia issue changes rapidly in my case, I don't know how much time I have " to spare " to figure out how to help it. My GI doctor has been treating my high blood ammonia, but it is treating the symptom, not the cause. Now if I had cirrhosis, he'd be able to treat the symptoms as well, but my liver's in fine shape. Take care, RH > 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 Thanks for your response, Ann-Marie, and all the good wishes. I wish I could travel without my family, but with episodes of dementia and confusion, I try not to do long travel by myself. I'm good for the better part of the day, but when I get an episode, I usually need a lot of help to get out of it (like someone to tell me to take my medication when needed). Philly is looking more probable at this point, but don't know what *their* appointment lag time is (or if CHOP would see me). I am keeping the October appointment for now... I just don't know how I feel about calling Maggie about it, being a new patient and all... Thanks, RH > > > 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. .... Quote Link to comment Share on other sites More sharing options...
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