Guest guest Posted November 26, 2003 Report Share Posted November 26, 2003 Joe Welcome to the group. Your symptoms sure sound familar. I hope all goes well with the biopsy and that you get some answers. laurie > > Reply-To: > Date: Wed, 26 Nov 2003 05:35:19 -0000 > To: > Subject: Intro for Joe Dunfee > > I just joined the list, so here is my intro; > > Joe Dunfee, Lancaster PA, USA, 39 years old > Type I diabetes since age 22 > Slight build, 135 lbs, 5'7 " > No health issues until I developed the diabetes. > Currently being evaluated for Mito > > 5 years ago, I developed some digestive problems, which were > automatically attributed to complications from diabetes. Mainly it > was stomach not emptying properly at times, intermittent diarrhea, > but all fairly mild. Then there were some fatigue issues, which got > much worse last year. A year ago I briefly took an antibiotic to > treat what was believed to be a bacterial blooming within my > intestines, and within 2 days felt better than I had in years. But > as months passed, it became apparent that I was not fully recovering. > > Over the past year, symptoms have varied and changed, though overall > the trend is towards improvement. Here is a rough sequence. > > Jan-Mar - periodic, unexplained " short of breath " as though I had > done something strenuous. > > Jan-Mar mostly and periodically since then - A swelling sensation > just > above and to the sides of my adam's apple > > Entire year - Easily fatigued. I used to be able to mow a fairly large > lawn, but over the past few years even my new home's small yard > is too much for me. > > Entire Year - Periodic fullness in my stomach from food not moving on. > > Last 6 mos - Occasionally feeling light headed when rising. It has > been > worse over the last 3 months and is becoming a problem. > > > Tests done; > > A zillion blood work tests, negative for Epstein-barr, thyroid and > other likely problems. > -Cardiac Stress Test (OK) > -Sleep Study (mostly OK, Technician noted many episodes of shallow > breathing.) > -MRI of neck, thyroid (OK) > -Breathing function test, Breathing stress test (Lactic acid was > detected at earlier levels of exertion than it should have) > -Nerve conduction (Dr says nerves are in better condition than > average > for the number of years I've had diabetes) > -Blood work recently showed slightly elevated levels of lactate and > pyruvate. > > I have a deep muscle biopsy tomorrow AM, and I will keep you all > posted on the results. > > Joe Dunfee > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2003 Report Share Posted November 26, 2003 Joe, Welcome to the group. I hope your biopsy goes well. Smiles, a (27 yr old- mitochondrial cytopathy COX Deficiency) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2003 Report Share Posted November 26, 2003 Joe, I just read your message. It sure sounds like you have been thru the "mill." I hope the muscle biopsy goes well and you get your answers. Please let us know the results when you have them. Get plenty of rest after your biopsy. I just wanted to be sure to welcome you to the group. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2003 Report Share Posted November 26, 2003 Thank you all for the welcomes. I went in for the procedure this morning (a 1 hr drive) and they took me to the prep room, where they also brought me the paper work. I said I had some paperwork for them as well. Par for the course, they said the CPT code I was restricting them to performing was not sufficient. There were other codes for the procedure room and the follow up pathology, but they didn't know what those codes were. I really spent hours trying to get this information from them weeks before, and get all the insurance pre- approved. But, I am determined that this time I am I not going to get stuck with unexpected bills due to administrative errors and billing problems. So, for the second time, I canceled the procedure at the last minute. This time, I stayed at the hospital, and spoke with the various individuals involved trying to get a solution, which wasn't forthcoming. I was there for 4 hours. Later that day, after I drove back to work I called my insurance contact, and he agreed to modify his pre-approval leter to make it more generic. I will also re-write my own letter to the hospital, so that they don't need to sign it. Rather, I will write the sentence " Note that I am signing with the restrictions listed on the attached letter " . My attached letter will restrict them to only doing the procedures which my insurance described to me in their letter. I suspect they will just let it go, and not really balk at my modification to the financial responsibiliy form. My letter will be added to my folder without really being read. Since the clerk is not being asked to sign anything, they won't feel personally responsible. I should add that I felt that most of the people involved with all this are quite sympathetic. They are as frustrated with the system as I am. Joe Dunfee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2003 Report Share Posted November 27, 2003 Joe I'm so sorry that you had such a horrible time. I don't know if this will help, but the CPT codes that are used by many are: 528.9 mitochondrial myopathy 639.4 metabolic myopathy 277.8 metabolism disorder I hope things can be worked out so you can have the biopsy. laurie > > Reply-To: > Date: Thu, 27 Nov 2003 04:51:57 -0000 > To: > Subject: Re: Intro for Joe Dunfee > > Thank you all for the welcomes. I went in for the procedure this > morning (a 1 hr drive) and they took me to the prep room, where they > also brought me the paper work. I said I had some paperwork for them > as well. > > Par for the course, they said the CPT code I was restricting them > to performing was not sufficient. There were other codes for the > procedure room and the follow up pathology, but they didn't know what > those codes were. I really spent hours trying to get this > information from them weeks before, and get all the insurance pre- > approved. But, I am determined that this time I am I not going to > get stuck with unexpected bills due to administrative errors and > billing problems. > > So, for the second time, I canceled the procedure at the last > minute. This time, I stayed at the hospital, and spoke with the > various individuals involved trying to get a solution, which wasn't > forthcoming. I was there for 4 hours. > > Later that day, after I drove back to work I called my insurance > contact, and he agreed to modify his pre-approval leter to make it > more generic. I will also re-write my own letter to the hospital, so > that they don't need to sign it. Rather, I will write the > sentence " Note that I am signing with the restrictions listed on the > attached letter " . My attached letter will restrict them to only > doing the procedures which my insurance described to me in their > letter. > > I suspect they will just let it go, and not really balk at my > modification to the financial responsibiliy form. My letter will be > added to my folder without really being read. Since the clerk is not > being asked to sign anything, they won't feel personally responsible. > > I should add that I felt that most of the people involved with all > this are quite sympathetic. They are as frustrated with the system > as I am. > > Joe Dunfee > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2003 Report Share Posted November 28, 2003 Joe, The last I heard was that the Europeons were going to be the ones coming up with a dx code for mitochondrial disease, as there really isn't one now and it makes billing a challenge. joespuppets wrote: > Thank you all for the welcomes. I went in for the procedure this >morning (a 1 hr drive) and they took me to the prep room, where they >also brought me the paper work. I said I had some paperwork for them >as well. > > Par for the course, they said the CPT code I was restricting them >to performing was not sufficient. There were other codes for the >procedure room and the follow up pathology, but they didn't know what >those codes were. I really spent hours trying to get this >information from them weeks before, and get all the insurance pre- >approved. But, I am determined that this time I am I not going to >get stuck with unexpected bills due to administrative errors and >billing problems. > > So, for the second time, I canceled the procedure at the last >minute. This time, I stayed at the hospital, and spoke with the >various individuals involved trying to get a solution, which wasn't >forthcoming. I was there for 4 hours. > > Later that day, after I drove back to work I called my insurance >contact, and he agreed to modify his pre-approval leter to make it >more generic. I will also re-write my own letter to the hospital, so >that they don't need to sign it. Rather, I will write the >sentence " Note that I am signing with the restrictions listed on the >attached letter " . My attached letter will restrict them to only >doing the procedures which my insurance described to me in their >letter. > > I suspect they will just let it go, and not really balk at my >modification to the financial responsibiliy form. My letter will be >added to my folder without really being read. Since the clerk is not >being asked to sign anything, they won't feel personally responsible. > > I should add that I felt that most of the people involved with all >this are quite sympathetic. They are as frustrated with the system >as I am. > >Joe Dunfee > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2003 Report Share Posted November 28, 2003 5 years ago, I developed some digestive problems, which were automatically attributed to complications from diabetes. Mainly it was stomach not emptying properly at times, intermittent diarrhea, but all fairly mild. Then there were some fatigue issues, which got much worse last year. A year ago I briefly took an antibiotic to treat what was believed to be a bacterial blooming within my intestines, and within 2 days felt better than I had in years. But as months passed, it became apparent that I was not fully recovering. Hi Joe, I wanted to send you a late welcome to the group! I live in Bucks County, PA, an hour north of Philadelphia. I am 26 and have many of the symptoms you described.....I started with severe stomach problems at age 14 that progressed to include many of the symptoms I have now. Autonomic dysfunction, muscle weakness and pain, peripheral neuropathy, etc are a few. I get all of my nutrition intravenously. I get the bacterial overgrowth you mentioned pretty frequently, as well. I just had the muscle biopsy done last month in Atlanta to test for mito. Hopefully the results will be back by mid January. Where are you treated for your mito? Do you see any doctors in Philadelphia? Almost all of my doctors are at the University of Pennsylvania. There is a great mito support group out of Philadelphia though the UMDF which you may be interested in. They are having a holiday party next weekend. Hope you get some answers and support. This is a great group! Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2003 Report Share Posted November 29, 2003 > as well. I just had the muscle biopsy done last month in Atlanta >to test for mito. Hopefully the results will be back by mid >January. Where are you treated for your mito Why did you go to Atlanta for the biopsy? I went to Hershey Medical Center, which is associated with University of Pennsylvania, and certainly closer to you. Also, the Dr. said it is unlikely that I actually have mito. But this biopsy is a pretty major deal, and costs around $4,000, so I'm assuming he has enough reason to suspect it. (I've not actually had the biopsy yet, I delayed it to straighten up some insurance stuff) Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2003 Report Share Posted November 30, 2003 I might be able to answer the "why Atlanta" question for you. Atlanta is one of a very few locations that is considered to have a mito specialist AND that does fresh biopsies. I had several biopsies that were flash frozen and sent to a lab some where with conflicting results. It wasn't until a fresh biopsy was done and the enzyme and OXPHOS testing was done that I got the correct mito dx. The chemical reactions can't be measured on frozen muscle, although some of the other testing is done afterward on frozen pieces. It is a very complex disease and very complex issue to get the testing done. One of the main issues with having biopsies done in locations other than the mito centers, is that the locals doctors don't know what to test for, to get a complete picture. There is no agreed upon protocol for dx mito, so........ Long story short, is if I had known about fresh vs. frozen biopsies at the beginning of my journey, I wouldn't have 3 extra scars on my body. YMMV. Have you gone to the UMDF website and done any reading there? You might have a better general understanding of the complexity of the disease and understand why it is so hard to dx. Most doctors in general have very little biochemistry background other than why they got in med school. I would ask exactly WHAT they plan to test for and how before going through the biopsy. Good luck! joespuppets wrote: as well. I just had the muscle biopsy done last month in Atlanta to test for mito. Hopefully the results will be back by mid January. Where are you treated for your mito Why did you go to Atlanta for the biopsy? I went to Hershey Medical Center, which is associated with University of Pennsylvania, and certainly closer to you. Also, the Dr. said it is unlikely that I actually have mito. But this biopsy is a pretty major deal, and costs around $4,000, so I'm assuming he has enough reason to suspect it. (I've not actually had the biopsy yet, I delayed it to straighten up some insurance stuff) Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2003 Report Share Posted November 30, 2003 Why did you go to Atlanta for the biopsy? I went to Hershey Medical Center, which is associated with University of Pennsylvania, and certainly closer to you. Hi Joe, did an excellent job of summing up the reasons for my trip to Atlanta. I was initially told that it could be done at The University of Penn, but after doing my own research and finding a mito doctor who said it needed to be done fresh, I decided that Dr Shoffner in Atlanta was the best place for me to go. Both Atlanta and Cleveland Clinic are considered two of the best centers to go for fresh mito biopsies. Mayo, Columbia Presby in NYC, and San Diego are several other places that are well known for mito biopsies. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 Joe, I go to Hershey as well. Whom do you see there? I see Dr. and a bunch of others. I had one biopsy done in town and the other at CCF. I understand why Malisa went to Atlanta...the level of testing is much greater than what is done at Hershey. Kristie Message: 1 Date: Sun, 30 Nov 2003 05:15:37 -0000 Subject: Re: Intro for Joe Dunfee> as well. I just had the muscle biopsy done last month in Atlanta>to test for mito. Hopefully the results will be back by mid >January. Where are you treated for your mito Why did you go to Atlanta for the biopsy? I went to Hershey Medical Center, which is associated with University of Pennsylvania, and certainly closer to you. Also, the Dr. said it is unlikely that I actually have mito. But this biopsy is a pretty major deal, and costs around $4,000, so I'm assuming he has enough reason to suspect it. (I've not actually had the biopsy yet, I delayed it to straighten up some insurance stuff) Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 I have a question Kristie. Walter's biopsy was done at Hershey and they found mito myopathy. The rest of the sample was then sent to New York and they found a MERFF point mutation (after the second try). I can then assume that since they definitely found this point mutation that this would not be a false positive. I know false negatives are common, but how about false positives. And Joe, my son also sees Dr. at Hershey Med. We've not had any problems with insurance (but we don't need a referral). They didn't even give us a problem with the biopsy. As the saying goes...sometimes you eat the bear and sometimes the bear eats you. We've been eaten by that bear WAY too many times, it's nice to do a little feasting ourselves. Kim > Joe, > I go to Hershey as well. Whom do you see there? I see Dr. and a bunch of others. I had one biopsy done in town and the other at CCF. I understand why Malisa went to Atlanta...the level of testing is much greater than what is done at Hershey. > > Kristie > > > > Message: 1 > Date: Sun, 30 Nov 2003 05:15:37 -0000 > From: " joespuppets " <joespuppets@y...> > Subject: Re: Intro for Joe Dunfee > > > as well. I just had the muscle biopsy done last month in Atlanta > >to test for mito. Hopefully the results will be back by mid > >January. Where are you treated for your mito > > Why did you go to Atlanta for the biopsy? I went to Hershey > Medical Center, which is associated with University of Pennsylvania, > and certainly closer to you. > > Also, the Dr. said it is unlikely that I actually have mito. But > this biopsy is a pretty major deal, and costs around $4,000, so I'm > assuming he has enough reason to suspect it. (I've not actually had > the biopsy yet, I delayed it to straighten up some insurance stuff) > > > Joe Quote Link to comment Share on other sites More sharing options...
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