Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 Steve I'm sorry you weren't able to go to your appointment as planned, but glad your wife is now feeling better. I know you are disappointed and want help now, but things have really improved for most in their search for a diagnosis. Many of us had to face the run around for 10 to 20 years. It is frustrating and tiring to say the least. I still have doctor's offices who change appointments either months before or the day of. It sure isn't a perfect system. Hang in there, laurie > Hi all > > Last week I was scheduled to see my neuro Dr. Cros at MGH. I finallly got > the letter that I needed from him (after yet another frustrating string of > delays) and the radiology report from my neck MRI. So I figured I might get > referrals from him, for surgery (big lipomas all over the back of my head, > neck, shoulders, and back, which show very well with " fat-sat " MRI settings) > and to the MDA clinic (which, though actually IN his office of associates, > has a different gatekeeper and wants a formal referral). > > Instead, on the day before the appointment in Boston (which is about 90 > minutes from my home) my wife got very ill with some kind of food poisoning > (better in a couple of days, all gone in a week). I used to drive that far, > but in the last year or so I feel much safer with my wife driving while I > mostly sleep (I sometimes drive on the way back home). So I very reluctantly > had to cancel. I called the next day, and the best they could do for me was > THREE MONTHS LATER, in October. > > I write this for no particular purpose, other than to complain and seek > commiseration. My main hope with seeing this doc again was to get referrals > so that I can get out from under these unbelievable delays with him, but > instead (due to a coincidental brief illness) I'm now on the slow track > again. Belatedly I realize that he's not really interested in treating me > anyway. But yet he doesn't seem anxious to send me to anyone who might. Just > endless tests (which wouldn't happen except for my advocacy) to little > avail, except to further support my claim that yes there really IS something > the matter with me. I wouldn't be so stuck in this cycle of MGH docs except > that I happened to obtained " free care " there (and I have no real insurance > otherwise). > > Sigh.... > Steve D. > > > 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 July 25, 2005 Report Share Posted July 25, 2005 Laurie Thanks so much for your kind words. It means a lot to me to hear that others are frustrated sometimes too. And I realize that, slow as it's been, I have made progress, with diagnosis anyway, if not treatment. A real oddity today, that the AA from this doctor's office called me OUT OF THE BLUE after I had already rescheduled (last week) for October, which they told me at the time was the next earliest slot. Today, however, they offered me an appt in early September. This will be the same day that I was already slated to see a cardiologist, at MGH. So now it will be a much longer day. And this time, for a different reason, my wife will be unable to drive me and I'll be trying my best to manage on my own, driving there and back. I don't know whether I'm hoping that the cardio will want me to do a stress test then and there, or schedule a lab slot for another time. I'd like to get as much done in a visit as I can, but I'm not so sure this would be the best day to be knocking myself out on a treadmill (or even stressing my heart with the chemical approach). But perhaps I'll get a thorough echo and anything else (I already know I have right bundle branch block). And then, also today, I tried to fire up my motor boat that I've been working on in order to sell and raise some desperately needed funds. I've been repairing extensive damage done by racoons that managed to winter on the boat, and also get things cleaned up. There was chewed-through wiring (now mostly fixed), and many other reasons to worry that the boat wouldn't start (it hasn't been run at all in two years). BUT with just a few seconds of cranking, voila the engine ran! So some days are good, some are bad. Life is like that, esp. for us mito people, but I guess for everyone else too. Thanks for helping me to be hanging in there! Steve D. > Date: Mon, 25 Jul 2005 09:32:49 -0400 > > Subject: Re: appointment blues > > Steve > > I'm sorry you weren't able to go to your appointment as planned, but > glad your wife is now feeling better. > > I know you are disappointed and want help now, but things have really > improved for most in their search for a diagnosis. Many of us had to > face the run around for 10 to 20 years. It is frustrating and tiring > to say the least. > > I still have doctor's offices who change appointments either months > before or the day of. It sure isn't a perfect system. > > Hang in there, > laurie > > > > Hi all > > > > Last week I was scheduled to see my neuro Dr. Cros at MGH. I finallly got > > the letter that I needed from him (after yet another frustrating string of > > delays) and the radiology report from my neck MRI. So I figured I might get > > referrals from him, for surgery (big lipomas all over the back of my head, > > neck, shoulders, and back, which show very well with " fat-sat " MRI settings) > > and to the MDA clinic (which, though actually IN his office of associates, > > has a different gatekeeper and wants a formal referral). > > > > Instead, on the day before the appointment in Boston (which is about 90 > > minutes from my home) my wife got very ill with some kind of food poisoning > > (better in a couple of days, all gone in a week). I used to drive that far, > > but in the last year or so I feel much safer with my wife driving while I > > mostly sleep (I sometimes drive on the way back home). So I very reluctantly > > had to cancel. I called the next day, and the best they could do for me was > > THREE MONTHS LATER, in October. > > > > I write this for no particular purpose, other than to complain and seek > > commiseration. My main hope with seeing this doc again was to get referrals > > so that I can get out from under these unbelievable delays with him, but > > instead (due to a coincidental brief illness) I'm now on the slow track > > again. Belatedly I realize that he's not really interested in treating me > > anyway. But yet he doesn't seem anxious to send me to anyone who might. Just > > endless tests (which wouldn't happen except for my advocacy) to little > > avail, except to further support my claim that yes there really IS something > > the matter with me. I wouldn't be so stuck in this cycle of MGH docs except > > that I happened to obtained " free care " there (and I have no real insurance > > otherwise). > > > > Sigh.... > > Steve D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 Dolores Thanks so much for your encouragement. And also for your sharing so much of your amazing story of perseverance. I'm sorry to hear of your struggles over the years, and more recently. From reading your other posts to this email group, I was already aware of a good bit of your story. But every time you tell it, I learn more. You might in some ways think of yourself as an " old lady " , but 69 doesn't seem too old to me any more. My wife just made friends with an 80 year old woman from our church (my wife's church, to be a bit more accurate, since I'm not able to attend the Sunday morning worship) and we've been enjoying all her stories, opinions, adventures, and interests a lot. So you hang in there too, and maybe some day you'll reach " old age " ! I've been married to Gail since June of last year. I have two " previous " kids Jake 22 and 21 (neither have any mito signs). Gail has one " previous " kid Abby 21. None are married yet. I'm 55 and Gail is 47, so BELIEVE ME we're not having any more! Gail is about to finish seminary and become a pastor (second or third career). I am disabled (even though Social Security doesn't think so, YET) but previously I did contract computer engineering for many years. Thanks for asking about us, and thanks again for your kind words. Steve D. > Date: Mon, 25 Jul 2005 08:51:38 -0700 (PDT) > > Subject: Re: appointment blues > > Steve: This is the voice of experience from and old lady. Please don't delete before you read. My name is Dolores , I am a 69 year old widow with one surviving son, Bill age 52, who drives back and forth from Topeka, KS to Kansas City, MO every day to maintain his job he has had since he was 18, as a trackman with Burlington Northern/Santa Fe. I lost my 48 year old son August 25, 2004 at 2:15 am with me by his side as they had moved him from ICU to the floor to die, he was my helper and my legs. I keep thinking if I could have gotten to him in person and learned that his kidneys's were failing instead of what he was telling me to passify me maybe he would have seeked further medical help and even if it had meant dialysis. Afterr his death I found out that his alcoholic wife had a boyfriend and was rarely home and if it hadn't been for a mentally challenged young man who had idolized my son since he was a child and his sister (who my son had worked for for) after > lost his sight I don't know what he would have done. I won't say " I can't walk " , I will simply state that without an aid to help me walk very short distances I would be unable to walk at all. I was mis-diagnosed with Parkinsons in 2001 and if it hadn't been for a caring Orthopaedic doctor ( Baker) that has treated me for 32 years I would probably be in a nursing home. He has his own practice and is semi-retired meaning he does what he wants to do and sees who he wants to see. He never believed I had Parkinsons and fought it, he refused to state on anything he sent to help me get short-term disabilty in February, 2004, he gave all my other conditions and that I also had a " Parkinson Like Condition " . Due to the holodays coming up and me living alone my cousin and her husband were in Missouri visiting and had gotten me a ticket to fly home with them to Washington State so I wouldn't be alone during the holidays. Bill's present wife has " two families " due to divorce > and remarriages so my son is caught up in Christmas with both her families, my 27 year old Grandson (with three daughters) has to be at his in-laws as well as his Mother's family for Christmas, so I would have been alone most of the time. We were leaving on December 20th and on the 18th Dr. Baker called me out of the blue one day, I was very stunned as a person rarely ever gets a phone call from their doctor? I asked him if I had an appt, he said " no, but I need you to make one as you need to get a different neurologist as I have proof that you do not now and never did have Parkinsons " . He said he had tried to talke with my former neurologist hung up on him, I told him I was leaving in two days so he had my Grandson and me come by his office so I could sign that he was acting as my agent and my Grandson has my DPOA for heathcare so I went to Washington State, he fired my former neurologist consulted with my Grandson and Dr. Wade Welch and one morning my cousin told me I a phone > call and it was Dr. Welch's office setting up an appt for me when I got back which at that time he confirmed the mis-diagnosis and started pulling all the Parkinsons Meds, one pill at a time, one prescription at a time. The conclusion was that I had a Mytochondrial Dysfunction and probably had since I was a child. After what tests Dr. Welch could get past Cigna and from going over my MRI's prior to and since my Gamma Knife in 1996 (I have two brain tumors) consults with my Neurosurgeon and my cardiologist they moved a step forward to suspected Mitochondrial Myopathy. A couple of weeks ago during the night on friday nite a horrible pain in my left elbow woke me up and when I reached to pull myself up with my left hand and realized my left arm was " gone " . I worked with it for quite a while and it started to tingle so I went back to bed saying to myself that I must have slept on my arm wrong, saturday around 4:15 pm I set out some hamburger to unthaw for Sunday, my last two slices > of " boiled ham " and four slices of bread, went and sat down to get my Aunt's birthday card and some pictures of my great-grandchildren ready to be mailed, I wrote my Aunt's name and the next thing I knew Wheel of Furtune was coming on at 6:30 pm, my boiled ham was HOT to the touch, my hamburger bled all over my counter and my bread was so hard it would have been good to use as attack weapons. I chalked it up to ?? then Sunday am I started having chest pains so with the events of the last two days I called my son, hoping he didn't have his 1957 Chevy nine passenger station wagon entered in a car show. When he finally answered I asked if he was busy to which he promptly said, " Mom I am standing here with the soap still on me with two towels wrapped around me, What is Wrong " ? I told him I thought I needed to go to ER as I had talked to the nurse that answers the emergency line and she wanted to call 911. He got here as fast as he could and I had told him to go home but they > promptly admitted me and asked Bill if he could contact Jeff (his son). After many greuling tests they said I had a mild stroke friday night, a " silent seizure " (probably due to a low dilantin level) and a light heart attack. When I finally got out of that prison I said to myself " no more of this " , I now am trying to recover from pneumonia in my left lung they wanted to readmit me but I vetoed that as my son had to get up early and get home late so he could come by my apt and take care of my 18 year old cat. The only good thing that came from the hospitalization is Dr. Welch now has enought to refer me to the MDA clinic in KC and since I was hospitalized Dept of Aging is going to help me with transportation to and from. Life is not what we think it is going to be, not quite two years ago I was working eight to ten hours daily, able to get me where I needed to go in my 1999 Blazer was completely independent and planned to keep working but with each new Parkinson Med I was > given I got worse and worse. A mis-diagnosis of Parkinsons killed my cousin recently, she found out just shortly before her death but her condition was so deterioated from the meds that she passed away with a few months after > her neurologist retired and a new neurologist told them about the mis-diagnosis. Steve, I'm not trying to play who is having the worst problems, I want you to know that I know exactly where you are coming from and no you really aren't (in my opinion) complaining. You are very frustrated with the medical profession, all of the detours, all of the problems that are beyond your or your wife's control and a lot of fear and the need for answers. I have had five or aix lipomas removed from my legs as well as a seven year battle with cancer between the time I was 27 and 34 starting with ovarian cancer and ending up with double mastectomies. I had two children of my own and a foster-daughter, Bill was 10 when all this started, was seven and Debbie was six. Bill served a sentence for seven years that made him a man very early in life. My Great-uncle was a Nazarene Minister and I keep hearing his words and trying to make myself remember that I always believed him, so I guess when > he told me shortly before he died that God will not give us more than we can handle keeps me going (even thought I'm sure I broke my toe the other day)! With that I will say Good Luck, God Bless and I hope your wife is recovering OK. By the way if I may ask, how old are you and do you have children? Dolores > > > Steve micro_choice@...> wrote: > Hi all > > Last week I was scheduled to see my neuro Dr. Cros at MGH. I finallly got > the letter that I needed from him (after yet another frustrating string of > delays) and the radiology report from my neck MRI. So I figured I might get > referrals from him, for surgery (big lipomas all over the back of my head, > neck, shoulders, and back, which show very well with " fat-sat " MRI settings) > and to the MDA clinic (which, though actually IN his office of associates, > has a different gatekeeper and wants a formal referral). > > Instead, on the day before the appointment in Boston (which is about 90 > minutes from my home) my wife got very ill with some kind of food poisoning > (better in a couple of days, all gone in a week). I used to drive that far, > but in the last year or so I feel much safer with my wife driving while I > mostly sleep (I sometimes drive on the way back home). So I very reluctantly > had to cancel. I called the next day, and the best they could do for me was > THREE MONTHS LATER, in October. > > I write this for no particular purpose, other than to complain and seek > commiseration. My main hope with seeing this doc again was to get referrals > so that I can get out from under these unbelievable delays with him, but > instead (due to a coincidental brief illness) I'm now on the slow track > again. Belatedly I realize that he's not really interested in treating me > anyway. But yet he doesn't seem anxious to send me to anyone who might. Just > endless tests (which wouldn't happen except for my advocacy) to little > avail, except to further support my claim that yes there really IS something > the matter with me. I wouldn't be so stuck in this cycle of MGH docs except > that I happened to obtained " free care " there (and I have no real insurance > otherwise). > > Sigh.... > Steve D. Quote Link to comment Share on other sites More sharing options...
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