Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Hi Luci, The TPO antibody test which is positive does confirm that your hyperthyroidism is autoimmune (Graves' disease). The range for FT4 is 0.8-1.8 and your TSH suggests that you're hypothryoid. What dose of meds are you on? Your FT3 is still elevated but it can take longer to fall when you're on ATDs. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Oh, forgot to mention, alkaline phosphatase is a liver enzyme. It's often elevated in hyperthyroidism and it can also rise in people taking ATDs, estrogens, acetaminophen and many other meds. Usually the rise is modest and is dose related if caused by meds. Protein consists of albumin and globulin. It's not unusual to have a little more of one or the other. Unless the rise is dramatic, this isn't usually significant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Luci, Quick note...I had elevated alkaline phos. for a long time. Like Elaine said, it can be a symptom of GD or from the meds or from something else. I worried a lot about this and did a lot of research. Basically, if your numbers aren't too high, it's nothing to worry about. My stupid doc told me I probably had liver cancer! If your numbers are in the hundreds, you're cool. It's when it gets to be 3000 that you need to look for other causes. Having a cold or taking tylenol can raise these levels too. Did your doctor tell you what the numbers were? Kristi Test Results > > > > Ok guy's. I went over to the Bone Head Dr. and picked up the results from > the blood tests I made him do... The TSI results aren't back yet but here > are the ones I did get .. Any ideas ?? > > > TPO 4 IU/ML <2 > TSH 4.73 MIU/L 0.40 - 5.50 > T4, Free 1.0 NG/DL 0.0 -1.8 > T3, Free 482 PG/DL 230 - 420 > > I didn't even waste my breath trying to talk to him.. I'll be giving the > results to the New Dr. on Tuesday.. > > There are a few other things that came back high but I'm not even sure > what they are.. ALBUMIN, and ALKALINE PHOSPHATASE > Any ideas ?? > > Luci > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 Hi Luci, Usually, you're started out on a low dose of Armour and then it's raised. You're on 1.5 grains daily which is on the low side so hopefully your new doc will look at your labs carefully. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 take all 3 pills in the morning? now that really does confirm his bonehead status. the idea of taking 3 pills daily is so that you'll have stable levels throughout the day. The T3 in Armour has a short half life so the effects wear off after a few hours. Taking the dose at one time would leave you feeling great or hyper anyway for a few hours and then you'd drag your way or at least not feel as good for the rest of the day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 Good Morning Elaine, Like I said.. I didn't talk to the DR. when I picked up my test results, but maybe I should have.. This is the guy that told me that since I had the RAI in Sept. 2000 that I no longer had GD... If it weren't for you guys here, I wouldn't even have known about the TPO or TSI tests.. It was a pleasure to go to his office on Monday and present him with the list of tests that I wanted done.. Now, he didn't appreciate my input or my insistence that he basically " did what he was told " and informed me to find a different Dr... NO PROBLEM.. I found an Endo that comes to my area once a week. He seems OK after only 1 visit.. but time will tell.. < The range for FT4 is 0.8-1.8 and your TSH suggests that you're hypothryoid. That was a typo on my part.. I meant to type 0.8 not 0.0 < What dose of meds are you on? I am taking Armour Thyroid... 3 - 32mg tabs a day Thanks for being here for us... Luci -- Re: Test Results Hi Luci, The TPO antibody test which is positive does confirm that your hyperthyroidism is autoimmune (Graves' disease). The range for FT4 is 0.8-1.8 and your TSH suggests that you're hypothryoid. What dose of meds are you on? Your FT3 is still elevated but it can take longer to fall when you're on ATDs. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 Good Morning Elaine, Like I said.. I didn't talk to the DR. when I picked up my test results, but maybe I should have.. This is the guy that told me that since I had the RAI in Sept. 2000 that I no longer had GD... If it weren't for you guys here, I wouldn't even have known about the TPO or TSI tests.. It was a pleasure to go to his office on Monday and present him with the list of tests that I wanted done.. Now, he didn't appreciate my input or my insistence that he basically " did what he was told " and informed me to find a different Dr... NO PROBLEM.. I found an Endo that comes to my area once a week. He seems OK after only 1 visit.. but time will tell.. < The range for FT4 is 0.8-1.8 and your TSH suggests that you're hypothryoid. That was a typo on my part.. I meant to type 0.8 not 0.0 < What dose of meds are you on? I am taking Armour Thyroid... 3 - 32mg tabs a day Thanks for being here for us... Luci -- Re: Test Results Hi Luci, The TPO antibody test which is positive does confirm that your hyperthyroidism is autoimmune (Graves' disease). The range for FT4 is 0.8-1.8 and your TSH suggests that you're hypothryoid. What dose of meds are you on? Your FT3 is still elevated but it can take longer to fall when you're on ATDs. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 Good Morning Elaine, Like I said.. I didn't talk to the DR. when I picked up my test results, but maybe I should have.. This is the guy that told me that since I had the RAI in Sept. 2000 that I no longer had GD... If it weren't for you guys here, I wouldn't even have known about the TPO or TSI tests.. It was a pleasure to go to his office on Monday and present him with the list of tests that I wanted done.. Now, he didn't appreciate my input or my insistence that he basically " did what he was told " and informed me to find a different Dr... NO PROBLEM.. I found an Endo that comes to my area once a week. He seems OK after only 1 visit.. but time will tell.. < The range for FT4 is 0.8-1.8 and your TSH suggests that you're hypothryoid. That was a typo on my part.. I meant to type 0.8 not 0.0 < What dose of meds are you on? I am taking Armour Thyroid... 3 - 32mg tabs a day Thanks for being here for us... Luci -- Re: Test Results Hi Luci, The TPO antibody test which is positive does confirm that your hyperthyroidism is autoimmune (Graves' disease). The range for FT4 is 0.8-1.8 and your TSH suggests that you're hypothryoid. What dose of meds are you on? Your FT3 is still elevated but it can take longer to fall when you're on ATDs. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 Kristi, Thanks for the reply... < Did your doctor tell you what the numbers were? My alkaline phos. number is 130 U/L 20 - 125 I'm probably worrying about nothing.. Luci -- Re: Test Results Luci, Quick note...I had elevated alkaline phos. for a long time. Like Elaine said, it can be a symptom of GD or from the meds or from something else. I worried a lot about this and did a lot of research. Basically, if your numbers aren't too high, it's nothing to worry about. My stupid doc told me I probably had liver cancer! If your numbers are in the hundreds, you're cool. It's when it gets to be 3000 that you need to look for other causes. Having a cold or taking tylenol can raise these levels too. Did your doctor tell you what the numbers were? Kristi Test Results > > > > Ok guy's. I went over to the Bone Head Dr. and picked up the results from > the blood tests I made him do... The TSI results aren't back yet but here > are the ones I did get .. Any ideas ?? > > > TPO 4 IU/ML <2 > TSH 4.73 MIU/L 0.40 - 5.50 > T4, Free 1.0 NG/DL 0.0 -1.8 > T3, Free 482 PG/DL 230 - 420 > > I didn't even waste my breath trying to talk to him.. I'll be giving the > results to the New Dr. on Tuesday.. > > There are a few other things that came back high but I'm not even sure > what they are.. ALBUMIN, and ALKALINE PHOSPHATASE > Any ideas ?? > > Luci > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2003 Report Share Posted February 3, 2003 Luci, Sorry I'm late responding...went out of town for the weekend. INteresting weekend here in TExas. My alkaline phos. was 328 when I was first diagnosed with GD. It slowly went down, but was elevated for almost a year. Yours is just barely elevated, so you'll be fine. I understand what it's like though. I went through my whole life always healthy, all tests fine, then you get these things and you don't know what to think! And usually the doctor is no help because he's so afraid of getting sued, (in case something is wrong), that he won't just say " it's nothing " . So don't feel bad for worrying! I've been there! Kristi Test Results > > > > > > > > > > Ok guy's. I went over to the Bone Head Dr. and picked up the results > from > > the blood tests I made him do... The TSI results aren't back yet but here > > are the ones I did get .. Any ideas ?? > > > > > > TPO 4 IU/ML <2 > > TSH 4.73 MIU/L 0.40 - 5.50 > > T4, Free 1.0 NG/DL 0.0 -1.8 > > T3, Free 482 PG/DL 230 - 420 > > > > I didn't even waste my breath trying to talk to him.. I'll be giving the > > results to the New Dr. on Tuesday.. > > > > There are a few other things that came back high but I'm not even sure > > what they are.. ALBUMIN, and ALKALINE PHOSPHATASE > > Any ideas ?? > > > > Luci > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2003 Report Share Posted February 3, 2003 Luci, Sorry I'm late responding...went out of town for the weekend. INteresting weekend here in TExas. My alkaline phos. was 328 when I was first diagnosed with GD. It slowly went down, but was elevated for almost a year. Yours is just barely elevated, so you'll be fine. I understand what it's like though. I went through my whole life always healthy, all tests fine, then you get these things and you don't know what to think! And usually the doctor is no help because he's so afraid of getting sued, (in case something is wrong), that he won't just say " it's nothing " . So don't feel bad for worrying! I've been there! Kristi Test Results > > > > > > > > > > Ok guy's. I went over to the Bone Head Dr. and picked up the results > from > > the blood tests I made him do... The TSI results aren't back yet but here > > are the ones I did get .. Any ideas ?? > > > > > > TPO 4 IU/ML <2 > > TSH 4.73 MIU/L 0.40 - 5.50 > > T4, Free 1.0 NG/DL 0.0 -1.8 > > T3, Free 482 PG/DL 230 - 420 > > > > I didn't even waste my breath trying to talk to him.. I'll be giving the > > results to the New Dr. on Tuesday.. > > > > There are a few other things that came back high but I'm not even sure > > what they are.. ALBUMIN, and ALKALINE PHOSPHATASE > > Any ideas ?? > > > > Luci > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 KMJ, That all sounds like positive news, especially the part about your going 5 weeks now without troubles. I'll be hoping that this reprieve lasts a lot longer for you. With hope and prayers, Heidi Heidi H. Griffeth South Carolina Southeastern Representative PAI, Intl. Thanks for prayers for my tests... went ok.. nothing sinister and the damage to y pancreas so far has been minimal. on a good note i have not had any troubles for 5 weeks and that is the longest i have been without an attack since i first started ...kmj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 KMJ, That all sounds like positive news, especially the part about your going 5 weeks now without troubles. I'll be hoping that this reprieve lasts a lot longer for you. With hope and prayers, Heidi Heidi H. Griffeth South Carolina Southeastern Representative PAI, Intl. Thanks for prayers for my tests... went ok.. nothing sinister and the damage to y pancreas so far has been minimal. on a good note i have not had any troubles for 5 weeks and that is the longest i have been without an attack since i first started ...kmj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2003 Report Share Posted March 29, 2003 > He wants me to start on Tapazole at 10mg a day and increase if > needed. OK , you may need to refresh my memory on this, but how bad are your symptoms and what are your lab's ranges? IIRC, and my mind's blurry now after driving kids for an hour, we're not talking mild, barely there hyperthyroidism, are we. I think there may be a school of thought subscribed to by incompetent docs of starting on a low dose and, if the patient shows s/he can tolerate the ATD, of gradually bringing it up to the more potent dose that should have been given to begin with. If your present condition warrants you on 20 or more, then that's where you start. Take care, Fay ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2003 Report Share Posted March 29, 2003 > He wants me to start on Tapazole at 10mg a day and increase if > needed. OK , you may need to refresh my memory on this, but how bad are your symptoms and what are your lab's ranges? IIRC, and my mind's blurry now after driving kids for an hour, we're not talking mild, barely there hyperthyroidism, are we. I think there may be a school of thought subscribed to by incompetent docs of starting on a low dose and, if the patient shows s/he can tolerate the ATD, of gradually bringing it up to the more potent dose that should have been given to begin with. If your present condition warrants you on 20 or more, then that's where you start. Take care, Fay ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 Hi Fay, I asked him what the results of the 4 blood tests had been, expecting him to show me so I could copy down, he opened the file and said I started at 14 (Free T4) then went to 22, down to 16 now at 18. He seemed surprised I am jumping around so much. I was surprised at the doseage he prescribed, after reading some things on this list I fully expected to start at 20 or so. My dad is a pharmasist so I'll ask him a bit more about this, he is kinda old school thought and thinks Dr's walk on water. He did say it is something he doesn't dispence very often so I'll do my own reading, I have a CPS manual of all the drugs so maybe I'll have a peek in there. I'm having the antibodies test on Monday. >OK , you may need to refresh my memory on this, but how bad are your >symptoms and what are your lab's ranges? IIRC, and my mind's blurry now >after driving kids for an hour, we're not talking mild, barely there >hyperthyroidism, are we. > >I think there may be a school of thought subscribed to by incompetent >docs of starting on a low dose and, if the patient shows s/he can >tolerate the ATD, of gradually bringing it up to the more potent dose >that should have been given to begin with. If your present condition >warrants you on 20 or more, then that's where you start. > >Take care, Fay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 Hi Fay, I asked him what the results of the 4 blood tests had been, expecting him to show me so I could copy down, he opened the file and said I started at 14 (Free T4) then went to 22, down to 16 now at 18. He seemed surprised I am jumping around so much. I was surprised at the doseage he prescribed, after reading some things on this list I fully expected to start at 20 or so. My dad is a pharmasist so I'll ask him a bit more about this, he is kinda old school thought and thinks Dr's walk on water. He did say it is something he doesn't dispence very often so I'll do my own reading, I have a CPS manual of all the drugs so maybe I'll have a peek in there. I'm having the antibodies test on Monday. >OK , you may need to refresh my memory on this, but how bad are your >symptoms and what are your lab's ranges? IIRC, and my mind's blurry now >after driving kids for an hour, we're not talking mild, barely there >hyperthyroidism, are we. > >I think there may be a school of thought subscribed to by incompetent >docs of starting on a low dose and, if the patient shows s/he can >tolerate the ATD, of gradually bringing it up to the more potent dose >that should have been given to begin with. If your present condition >warrants you on 20 or more, then that's where you start. > >Take care, Fay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Joanne What Dr. Enns says it probably true, but there are those of us who need to know for sure for our own peace of mind. I wonder if he would just drop it at this point. You might want to call those numbers and ask if they are doing fresh biopsies for those who don't need them as their mito doc. It might at least be a food in the door. laurie > > Reply-To: > Date: Sat, 04 Dec 2004 19:38:49 -0000 > To: > Subject: Test results > > > Well I finally got the results of my blood and urine tests. > Surprise, surprise they were all negative. From listening to all > the posts on this group that is what I kind of expected. I gather > it is rare to get any results the first time. However, that is as > far as Dr. Enns wants to take it. He doesn't want to do a muscle > biopsy or anything else. He says " There are no real treatments > availible. You are already taking the vitamin coctail and so I can > see no real benefit in you getting a biopsy " He does a frozen > biopsy anyway and I would rather get a fresh one done the first > time. He did give me Dr Di Mauro and Dr Shoffner's contact #'s as > they do fresh biopsys. > I have heard that they are not accepting new adult patients. Is > that true? I really don't know where to go from here. If any one > has some good advice I would appreciate it. I am so tired of > fighting the system. I'm glad I have you guys to talk to. Don't know > what I would do without you. > Joanne > > > > > > 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 December 4, 2004 Report Share Posted December 4, 2004 Hi Joanne, I'm sorry you have to go through all this. I hope you get some answers soon. I don't know about Dr. Shofner but I have seen Dr DiMauro. He is great but focuses on research. He only sees patients once in awhile if they interest him. I got lucky twice but now see his co-worker Dr Hirano at the MDA clinic. Dr Hirano was trained by DiMauro and is very knowledgable. They also do fresh biopsies now. If you want to make an appointment you can call . The great thing is that they are a MDA clinic. If you don't have insurance coverage or have high copays, the remainder is covered. MDA covered the 20% for my fresh biopsy after they billed my Medicare. If you have more questions, feel free to ask. S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Joann, I wish I could help with your dilema; I can surely relate. I can only offer my observations...for as little as that's worth. I was lucky enough to have abnormal blood and urine tests show up early in the investigation. I had doctors who were convinced this was a fluke and ran the same tests over and had them show up normal. Then again... abnormal. I've spoken to six neurologists since my abnormal labs. Only one of those seemed to think I'd be wasting my time with the biopsy (no cure anyway). Most doctors have insisted I get the biopsy. I agreed and made the decision to wait " patiently " to have a fresh biopsy at one of the mito centers. Ironically two local women I know of opted to have their biopsy done here (locally) and tested frozen. They both had their mito diagnosed in the few months while I was still waiting for the appointment for my fresh biopsy. I eventually did get the biopsy and the results which indicated no mitochondrial impairment and a deficiency of CoQ10 in my muscle tissue. What does this mean? I think all of who don't get a definate diagnosis from a biopsy will wonder if the results would be different if it were done by another doctor, examined by a different lab or taken from a different muscle. Or maybe it's in the timing- if you have this disease long enough and have enough tissue tested eventually you will find it? Probably safe to say that we are the guinea pigs at this time and most of the tests and biopsies performed are only helping with the " big picture " (although some have said their specific diagnosis has helped). That's not a bad thing, as we have to start somewhere. Best of luck in making this dififcult decision. Maggie > > Well I finally got the results of my blood and urine tests. > Surprise, surprise they were all negative. From listening to all > the posts on this group that is what I kind of expected. I gather > it is rare to get any results the first time. However, that is as > far as Dr. Enns wants to take it. He doesn't want to do a muscle > biopsy or anything else. He says " There are no real treatments > availible. You are already taking the vitamin coctail and so I can > see no real benefit in you getting a biopsy " He does a frozen > biopsy anyway and I would rather get a fresh one done the first > time. He did give me Dr Di Mauro and Dr Shoffner's contact #'s as > they do fresh biopsys. > I have heard that they are not accepting new adult patients. Is > that true? I really don't know where to go from here. If any one > has some good advice I would appreciate it. I am so tired of > fighting the system. I'm glad I have you guys to talk to. Don't know > what I would do without you. > Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 Joanne, My then 18 year old son had a muscle biopsy at Hershey Med Center in PA. The fresh sample was inconclusive but the frozen sample sent a month later was definite for MERFF. Go figure. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 Joanne, My then 18 year old son had a muscle biopsy at Hershey Med Center in PA. The fresh sample was inconclusive but the frozen sample sent a month later was definite for MERFF. Go figure. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 In a message dated 12/6/2004 5:07:44 PM Eastern Standard Time, lfitzger@... writes: I keep coming up on dead ends > and wonder if I am ever going to find my way out. Thank goodness I > am not in here alone. HI Joanne, I wanted to comment on your original post about not having many answers on the mito lab tests. I had several normal amino acid and organic acid panels, amongst other " mito tests " that came back normal initially. Now, they are almost always abnormal but I think it's b/c they are often done when I am not feeling well. However, my mito doctor says that lab tests are very frequently normal in adults. My muscle biopsy came back normal even though it was a fresh biopsy. However, I have all the symptoms and lab abnormalities to point towards mito and my mito doctor strongly believes it's still mito even though I don't have the muscle biopsy abnormalities. But, not having a definitive diagnosis is still very hard to cope with. I am much more at peace with it now than I was last year, but it was definitely a process of getting to this point. Keep fighting for yourself to get a diagnosis. There are so many varying opinions from mito doctors about ways to diagnose people that if this doctor doesn't back up the diagnosis, maybe it's wise to get an opinion from someone else. Most importantly, take care of yourself and listen to what your body is telling you. If you are on supplements and they're working then keep doing what you can to help yourself feel better. We're all here for you. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 Joanne I understand your feeling in a maze. It took over 15 years for me to get a diagnosis. It seemed like it never would come. Hugs, laurie > > Reply-To: > Date: Mon, 06 Dec 2004 18:32:18 -0000 > To: > Subject: test results > > > Thank you Laurie, Maggie and . I still don't know what I am > going to do. but I appreciate your input. The problem with this > disease (one of the problems :0)) is that it is so confusing. I feel > like I am wandering around in a maze. I keep coming up on dead ends > and wonder if I am ever going to find my way out. Thank goodness I > am not in here alone. And thank you Laurie for your advice on > increasing coenzyme Q10. I doubled my dosage last month. I have > noticed a difference in my stamina. Thursday and Friday of last > week were really taxing. I had all day meetings and by the end of > them I was exhausted. I figured that a crash was going to happen > soon. It didn't. I came home and slept and slept. I had some > weakness in my legs and a lot of cramping and twitching of muscles, > but I came out of it within two days! I never went into a bona fide > crash! That is a big difference. For the last 6 months I have been > going from crash to crash to crash. I am going to bump up my dosage > even more to see what that does. Hopefully I can find a dosage that > helps me have a better quality of life. > Joanne > > > > > > 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 December 7, 2004 Report Share Posted December 7, 2004 I went to Shoffner instead of DiMauro, although DiMauro is much closer for me. I wanted to know so I know what to look for in my kids, and also I never had a confirmation that I had a mito disease before the fresh muscle biopsy. I also found out the extent of my Complex I defect - no activity at all, so I got rid of my mito denial pretty quickly. There are different treatments out there, the mito cocktail is " standard " as a hit or miss, but you can't predict when a treatment or improvement in care could come along. It really depends on your own feelings whether you should pursue a fresh muscle biopsy - I felt it important enough to have the muscle biopsy surgery while I was pregnant. I never thought Dr. Shoffner would be my doctor, too far away, but I think they would still do the muscle biopsy and interpretation of results. Take care, RH > > Well I finally got the results of my blood and urine tests. > Surprise, surprise they were all negative. From listening to all > the posts on this group that is what I kind of expected. I gather > it is rare to get any results the first time. However, that is as > far as Dr. Enns wants to take it. He doesn't want to do a muscle > biopsy or anything else. He says " There are no real treatments > availible. You are already taking the vitamin coctail and so I can > see no real benefit in you getting a biopsy " He does a frozen > biopsy anyway and I would rather get a fresh one done the first > time. He did give me Dr Di Mauro and Dr Shoffner's contact #'s as > they do fresh biopsys. > I have heard that they are not accepting new adult patients. Is > that true? I really don't know where to go from here. If any one > has some good advice I would appreciate it. I am so tired of > fighting the system. I'm glad I have you guys to talk to. Don't know > what I would do without you. > Joanne Quote Link to comment Share on other sites More sharing options...
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