Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Im going to go to a dr in St. Louis friday. It wasnt one on my list but was referred by one that was on my list so I am hoping help is just around the corner. Im going to ask about CFS. I know I am awfully tired alot of the time but I have a hard time sleeping anyway with the pain so Im not really sure of what to ask or what to tell you guys my symptoms are. I know I hurt alot thats for sure and Im tired and very queasy most of the time. Often it feels just like having the flu or something so its hard for me to tell you or my dr exactly. Sorry. I would appreciate any input you can give me though. As always Tina In Missouri >From: " Aisha Elderwyn " <aisha@...> >Reply-onelist ><onelist> >Subject: Tina >Date: Wed, 8 Mar 2000 16:08:17 +1100 > >Hey Tina, > > > What is CFS? > >Chronic Fatigue Syndrome. > >I know doing the doctor rounds is exhausting! Especially when you fall into >the hands of incompetent people " practicing " medicine. But dont give up! > >Took me 9 years to find a doctor who ran the right tests and sent me onto >the people who saved my life. So believe and keep persevering, for you to >be >in pain there must be a reason! > >Have you had many tests and scans? Or any? Perhaps some of us could help >you >better if you give us a little more detail of what you have been tested >for. > > " >You sound like a very good person with an exceptionally > > good sense of humour for all that you have been through. I try really >hard >to be strong like that too. " > >You are - otherwise you would not be here! We are all here because we are >fighters - remember that! And thanks for the compliment.... you can always >call me wonderful... my ego likes it > >Some days are so difficult to get through, and so serious. Fighting for >your >life is serious! Humour I have found, brightens up the soul - and God knows >we can all use that at times! > > " You have made me really feel welcome and I do appreciate that very much. >Sorry for all the babbling. Please let me know what CFS is though. " > >You are welcome, and you are not babbling at all...that's what this list is >for. Please ask as much as you need. Vent as much as you need....we will >all >do our best to support each other. > >So tell us what you symptoms are, what tests you've had etc.. and perhaps >between us all we might be able to get some insight as to which direction >may be the best for you to take... > >Take care sweetie, >love, Aisha. > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Thank you so much for the info Aisha. I think it will be helpful. The dr Im going to see is a neurologist in a pain clinic I think??? I will print this and take it with me and I am going to be asking them to refer me to the immuologist (spelling???) Thank you so much. Tina >From: " Aisha Elderwyn " <aisha@...> >Reply-onelist ><onelist> >Subject: Re: Tina >Date: Thu, 9 Mar 2000 13:43:41 +1100 > >Tina darling, > >As one who was misdiagnosed for years... I understand!! What sort of doctor >are you going to see? I would strongly suggest that you seek the advice of >an immunologist. They know everything about everything! Including all >rheumatic and autoimmune diseases, and are usually experts at running >pathology tests. One is usually sent to an immunologist when no one else >knows what the hell is going on! Sound familiar? > >For now I would suggest the following pathology tests to rule out CFS, >Autoimmune diseases and Rheumatic diseases - these are the top three >branches of illnesses that could be causing you pain that I can think of... > >Best of Luck.... Aisha >ps. I'd print this and take the tests with you, so you can just give them >to >your doctor and say " I want these done. " > > >PATHOLOGY TESTS > >CBC = Complete Blood Count (In Australia this is a FBE) >Evaluate anaemia, leukemia, reaction to inflammation and infections, >peripheral blood cellular characteristics, state of hydration and >dehydration, polycythemia, hemolytic disease of the newborn, inherited >disorders of red cells, white cells, and platelets; manage chemotherapy >decisions; determine qualitative and quantitative variations in white cell >numbers and morphology, morphology of red cells and platelet evaluation > >CRP = C Reactive Protein >CRP is an acute phase reactant, which can be used as a test for >inflammatory >diseases, infections, and neoplastic diseases. > >ESR = Sedimentation Rate >Evaluate the nonspecific activity of infections, inflammatory states, >autoimmune disorders, and plasma cell dyscrasias > >ACE = Angiotensin-Converting Enzyme >Inflammation marker used in the diagnoses of sarcoidosis, anorexia, >pulmonary damage, diabetes mellitus, Gaucher's disease, leprosy, >histoplasmosis, primary biliary cirrhosis, amyloidosis, myeloma, some >alpha1-antitrypsin variants, Melkersson-Rosenthal syndrome, and >hyperthyroidism. It has been found increased in some cases of >hyperparathyroidism and in some instances of oncogenic hypercalcemia. >Positives are also reported in patients with extrinsic allergic alveolitis, >coccidioidomycosis, beryllium disease, asbestosis, silicosis, and alcoholic >liver disease. With response to chemotherapy/radiation therapy the ACE >level >has been noted to normalize. Cerebrospinal fluid ACE is useful in patients >with neurosarcoidosis. > >ANA = Antinuclear Antibodies >ANA is useful for diagnosis of SLE, SLE activity, lupus nephritis, >connective tissue diseases, scleroderma, progressive systemic sclerosis, >sjögren's syndrome, CREST syndrome, rheumatoid arthritis, discoid lupus, >necrotizing vasculitis, chronic active hepatitis, pulmonary interstitial >fibrosis, pneumoconiosis, tuberculosis, malignancy, subacute cutaneous >lupus, or syphilis. > >RA = Rheumatoid Arthritis >Help in the differential diagnosis and prognosis of arthritic disorders > >CPT = Comprehensive Metabolic Panel (In Australia this is a MBA) >Run to monitor your biochemical makeup >Test Includes Albumin; albumin/globulin (A/G) ratio (calculation); alkaline >phosphatase; aspartate aminotransferase (AST); bilirubin, total; BUN; >BUN/creatinine ratio (calculation); calcium; carbon dioxide, total; >chloride; creatinine; globulin, total (calculation); glucose; potassium; >protein, total; sodium > >CHRONIC FATIGUE SYNDROME AND IMMUNE DISFUNCTION PROFILE >Test Includes: CPT (see above); Absolute CD3; absolute CD4 (helper); >absolute CD4/2H4; absolute CD8 (suppressor); absolute CD8/CD38-+ >lymphocytes; absolute CD8/HLA-DR lymphocytes; absolute CD8/11B; CBC with >differential; CD4/CD8 ratio; CD4/2H4/CD4 ratio; Epstein-Barr, EBV-EA, IgG; >Epstein-Barr, EBV-VCA, IgG; Epstein-Barr, EBV-VCA, IgM, quantitative; HHV-6 >IgG antibodies, quantitative; percentage of CD3+ lymphocytes; percentage of >CD4+ lymphocytes; percentage of CD4/2H4; percentage of CD8+ lymphocytes; >percentage of CD8/CD38-+ lymphocytes; percentage of CD8/HLA-DR lymphocytes; >percentage of CD8/11B; percentage of NK cells (CD3- CD16+ CD56+) > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Thanks I would like your list and will check out the website. I am not sure really what the drs title is I only know I am going for the chronic migraines and the fibo. Thanks so much Tina >From: " Aisha Elderwyn " <aisha@...> >Reply-onelist ><onelist> >Subject: Re: Tina >Date: Thu, 9 Mar 2000 14:23:28 +1100 > >Hi Tina, > >Why are you seeing a neurologist? For the migraines? Good luck with finding >a good neuro...luckily mine was neuro number 2 but I have heard people go >from neuro to neuro looking for a good one. Remember you are in charge!! If >you dont like him then dont go back! There are plenty of doctors in the >sea.... (mostly because we have drowned them all! LOL) > >I have a good " find a physician " thingy .. link that is the word.. if you >want it. > >Or you can go to http://www.elderwyn.com/medicallinks/meddiseases.html for >the find a physician link > >with love >Aisha. > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 I have had two MRIs done and they show nothing and have had bocoos of scans and x-rays and have had about all I can think of or what the drs can think of but it is so hard because they show nothing. Tina >From: " Aisha Elderwyn " <aisha@...> >Reply-onelist ><onelist> >Subject: Re: Tina >Date: Thu, 9 Mar 2000 14:25:09 +1100 > >Tina, > >Just thinking... have you had any scans or x-rays? > >You may wish to request a chest x-ray and a MRI of the brain, neck, and >pituitary. > >Might help... >with love >Aisha. > ___________________________________ > >*BEING SICK* >A global community to support all of us who are struggling with illness, >injury or disability. http://www.elderwyn.com/community > >*ART AUCTION* >Now in progress....the last piece from this popular series.... " The Witching >Hour " from The Black Series... Collectors item! This is your last chance to >own the ORIGINAL painting! For viewings please visit >http://www.sold.com.au/au/item.asp?itm=252996 > > > Tina > > >Date: Wed, 8 Mar 2000 16:08:17 +1100 > > > > > >Hey Tina, > > > > > > > What is CFS? > > > > > >Chronic Fatigue Syndrome. > > > > > >I know doing the doctor rounds is exhausting! Especially when you fall >into > > >the hands of incompetent people " practicing " medicine. But dont give >up! > > > > > >Took me 9 years to find a doctor who ran the right tests and sent me >onto > > >the people who saved my life. So believe and keep persevering, for you >to > > >be > > >in pain there must be a reason! > > > > > >Have you had many tests and scans? Or any? Perhaps some of us could >help > > >you > > >better if you give us a little more detail of what you have been tested > > >for. > > > > > > " >You sound like a very good person with an exceptionally > > > > good sense of humour for all that you have been through. I try >really > > >hard > > >to be strong like that too. " > > > > > >You are - otherwise you would not be here! We are all here because we >are > > >fighters - remember that! And thanks for the compliment.... you can >always > > >call me wonderful... my ego likes it > > > > > >Some days are so difficult to get through, and so serious. Fighting for > > >your > > >life is serious! Humour I have found, brightens up the soul - and God >knows > > >we can all use that at times! > > > > > > " You have made me really feel welcome and I do appreciate that very >much. > > >Sorry for all the babbling. Please let me know what CFS is though. " > > > > > >You are welcome, and you are not babbling at all...that's what this >list >is > > >for. Please ask as much as you need. Vent as much as you need....we >will > > >all > > >do our best to support each other. > > > > > >So tell us what you symptoms are, what tests you've had etc.. and >perhaps > > >between us all we might be able to get some insight as to which >direction > > >may be the best for you to take... > > > > > >Take care sweetie, > > >love, Aisha. > > > > > > > > > > ______________________________________________________ > > Get Your Private, Free Email at http://www.hotmail.com > > > > > > ------------------------------------------------------------------------ > > Start your own free email group on eGroups. > > 1/1884/2/_/_/_/952562709/ > > ------------------------------------------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Thank you. I will try that. I really appreciate all the info everyone has and is giving me. Thanks so much. Tina >From: DiDomenico <vanessadd@...> >Reply-onelist >onelist >Subject: Re: Tina >Date: Wed, 08 Mar 2000 23:56:16 -0400 > >Tina, > >being very tired can also mean a lack of a nutrient, which often happens >because those medications we take sometimes makes it hard for our bodies >to absorb them, so we must atke supplements and eat very well. Try that, >something like 800iu of Vitamin E, at least 200mg of Vitamin C, some >Vitamin A and folic acid (try eating mangoes and papayas, or anything >citric and orange). eat great amounts of leafy vegetables, and if you >have anything neurological, eat lots of oils and fats. they help the >nervous system give itself some order. As for blood tests, do all your >electrolytes, such as sodium, potassium, and calcium, both in blood and >urine. > >You could also be suffering from depression, often caused by medicatons >and by pain itself! Try a good antidepressant first if you EVER feel >very sad, hopeless, suicidal, or cry for any little thing. > >Another thing i like to get energy is a few sniffs of pure oxygen. There >are oxygen bars in NYC now! > >vanessadd > >-- >Help The Epilepsy Connection to: >TEACH understanding so people will be able to pronounce the word >epilepsy and understand what it isn't. >SHOW society that accepting those with epilepsy benefits them >personally. >TELL OTHERS that fear cripples and ignorance is the monster-people with >epilepsy are human beings with abilities, talents and dreams. >CALL & CONNECT: 714-998-0391 >EMAIL: motzko@... >SURF THE WEB: epilepsy-connect.org > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Tina darling, As one who was misdiagnosed for years... I understand!! What sort of doctor are you going to see? I would strongly suggest that you seek the advice of an immunologist. They know everything about everything! Including all rheumatic and autoimmune diseases, and are usually experts at running pathology tests. One is usually sent to an immunologist when no one else knows what the hell is going on! Sound familiar? For now I would suggest the following pathology tests to rule out CFS, Autoimmune diseases and Rheumatic diseases - these are the top three branches of illnesses that could be causing you pain that I can think of... Best of Luck.... Aisha ps. I'd print this and take the tests with you, so you can just give them to your doctor and say " I want these done. " PATHOLOGY TESTS CBC = Complete Blood Count (In Australia this is a FBE) Evaluate anaemia, leukemia, reaction to inflammation and infections, peripheral blood cellular characteristics, state of hydration and dehydration, polycythemia, hemolytic disease of the newborn, inherited disorders of red cells, white cells, and platelets; manage chemotherapy decisions; determine qualitative and quantitative variations in white cell numbers and morphology, morphology of red cells and platelet evaluation CRP = C Reactive Protein CRP is an acute phase reactant, which can be used as a test for inflammatory diseases, infections, and neoplastic diseases. ESR = Sedimentation Rate Evaluate the nonspecific activity of infections, inflammatory states, autoimmune disorders, and plasma cell dyscrasias ACE = Angiotensin-Converting Enzyme Inflammation marker used in the diagnoses of sarcoidosis, anorexia, pulmonary damage, diabetes mellitus, Gaucher's disease, leprosy, histoplasmosis, primary biliary cirrhosis, amyloidosis, myeloma, some alpha1-antitrypsin variants, Melkersson-Rosenthal syndrome, and hyperthyroidism. It has been found increased in some cases of hyperparathyroidism and in some instances of oncogenic hypercalcemia. Positives are also reported in patients with extrinsic allergic alveolitis, coccidioidomycosis, beryllium disease, asbestosis, silicosis, and alcoholic liver disease. With response to chemotherapy/radiation therapy the ACE level has been noted to normalize. Cerebrospinal fluid ACE is useful in patients with neurosarcoidosis. ANA = Antinuclear Antibodies ANA is useful for diagnosis of SLE, SLE activity, lupus nephritis, connective tissue diseases, scleroderma, progressive systemic sclerosis, sjögren's syndrome, CREST syndrome, rheumatoid arthritis, discoid lupus, necrotizing vasculitis, chronic active hepatitis, pulmonary interstitial fibrosis, pneumoconiosis, tuberculosis, malignancy, subacute cutaneous lupus, or syphilis. RA = Rheumatoid Arthritis Help in the differential diagnosis and prognosis of arthritic disorders CPT = Comprehensive Metabolic Panel (In Australia this is a MBA) Run to monitor your biochemical makeup Test Includes Albumin; albumin/globulin (A/G) ratio (calculation); alkaline phosphatase; aspartate aminotransferase (AST); bilirubin, total; BUN; BUN/creatinine ratio (calculation); calcium; carbon dioxide, total; chloride; creatinine; globulin, total (calculation); glucose; potassium; protein, total; sodium CHRONIC FATIGUE SYNDROME AND IMMUNE DISFUNCTION PROFILE Test Includes: CPT (see above); Absolute CD3; absolute CD4 (helper); absolute CD4/2H4; absolute CD8 (suppressor); absolute CD8/CD38-+ lymphocytes; absolute CD8/HLA-DR lymphocytes; absolute CD8/11B; CBC with differential; CD4/CD8 ratio; CD4/2H4/CD4 ratio; Epstein-Barr, EBV-EA, IgG; Epstein-Barr, EBV-VCA, IgG; Epstein-Barr, EBV-VCA, IgM, quantitative; HHV-6 IgG antibodies, quantitative; percentage of CD3+ lymphocytes; percentage of CD4+ lymphocytes; percentage of CD4/2H4; percentage of CD8+ lymphocytes; percentage of CD8/CD38-+ lymphocytes; percentage of CD8/HLA-DR lymphocytes; percentage of CD8/11B; percentage of NK cells (CD3- CD16+ CD56+) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Hi Tina, Why are you seeing a neurologist? For the migraines? Good luck with finding a good neuro...luckily mine was neuro number 2 but I have heard people go from neuro to neuro looking for a good one. Remember you are in charge!! If you dont like him then dont go back! There are plenty of doctors in the sea.... (mostly because we have drowned them all! LOL) I have a good " find a physician " thingy .. link that is the word.. if you want it. Or you can go to http://www.elderwyn.com/medicallinks/meddiseases.html for the find a physician link with love Aisha. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Tina, Just thinking... have you had any scans or x-rays? You may wish to request a chest x-ray and a MRI of the brain, neck, and pituitary. Might help... with love Aisha. ___________________________________ *BEING SICK* A global community to support all of us who are struggling with illness, injury or disability. http://www.elderwyn.com/community *ART AUCTION* Now in progress....the last piece from this popular series.... " The Witching Hour " from The Black Series... Collectors item! This is your last chance to own the ORIGINAL painting! For viewings please visit http://www.sold.com.au/au/item.asp?itm=252996 Tina > >Date: Wed, 8 Mar 2000 16:08:17 +1100 > > > >Hey Tina, > > > > > What is CFS? > > > >Chronic Fatigue Syndrome. > > > >I know doing the doctor rounds is exhausting! Especially when you fall into > >the hands of incompetent people " practicing " medicine. But dont give up! > > > >Took me 9 years to find a doctor who ran the right tests and sent me onto > >the people who saved my life. So believe and keep persevering, for you to > >be > >in pain there must be a reason! > > > >Have you had many tests and scans? Or any? Perhaps some of us could help > >you > >better if you give us a little more detail of what you have been tested > >for. > > > > " >You sound like a very good person with an exceptionally > > > good sense of humour for all that you have been through. I try really > >hard > >to be strong like that too. " > > > >You are - otherwise you would not be here! We are all here because we are > >fighters - remember that! And thanks for the compliment.... you can always > >call me wonderful... my ego likes it > > > >Some days are so difficult to get through, and so serious. Fighting for > >your > >life is serious! Humour I have found, brightens up the soul - and God knows > >we can all use that at times! > > > > " You have made me really feel welcome and I do appreciate that very much. > >Sorry for all the babbling. Please let me know what CFS is though. " > > > >You are welcome, and you are not babbling at all...that's what this list is > >for. Please ask as much as you need. Vent as much as you need....we will > >all > >do our best to support each other. > > > >So tell us what you symptoms are, what tests you've had etc.. and perhaps > >between us all we might be able to get some insight as to which direction > >may be the best for you to take... > > > >Take care sweetie, > >love, Aisha. > > > > > > ______________________________________________________ > Get Your Private, Free Email at http://www.hotmail.com > > > ------------------------------------------------------------------------ > Start your own free email group on eGroups. > 1/1884/2/_/_/_/952562709/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Tina, being very tired can also mean a lack of a nutrient, which often happens because those medications we take sometimes makes it hard for our bodies to absorb them, so we must atke supplements and eat very well. Try that, something like 800iu of Vitamin E, at least 200mg of Vitamin C, some Vitamin A and folic acid (try eating mangoes and papayas, or anything citric and orange). eat great amounts of leafy vegetables, and if you have anything neurological, eat lots of oils and fats. they help the nervous system give itself some order. As for blood tests, do all your electrolytes, such as sodium, potassium, and calcium, both in blood and urine. You could also be suffering from depression, often caused by medicatons and by pain itself! Try a good antidepressant first if you EVER feel very sad, hopeless, suicidal, or cry for any little thing. Another thing i like to get energy is a few sniffs of pure oxygen. There are oxygen bars in NYC now! vanessadd -- Help The Epilepsy Connection to: TEACH understanding so people will be able to pronounce the word epilepsy and understand what it isn't. SHOW society that accepting those with epilepsy benefits them personally. TELL OTHERS that fear cripples and ignorance is the monster-people with epilepsy are human beings with abilities, talents and dreams. CALL & CONNECT: 714-998-0391 EMAIL: motzko@... SURF THE WEB: epilepsy-connect.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 I am already on amityptiline have been for several yrs. Other than helping me to sleep sometimes I cant see a difference. But thank you for the information. Tina >From: " Aisha Elderwyn " <aisha@...> >Reply-onelist ><onelist> >Subject: Re: Tina >Date: Fri, 10 Mar 2000 10:30:49 +1100 > > > From: DiDomenico <vanessadd@...> > > > > Tina, > > > " being very tired can also mean a lack of a nutrient, " > > " You could also be suffering from depression, often caused by medicatons >and >by pain itself! Try a good antidepressant first if you EVER feel very sad, >hopeless, suicidal, or cry for any little thing. " > >Good Point! I was actually anaemic due to a severe iron deficiency, and I >was as sick as shit! > > This does show up in the CBC blood test (Complete Blood Count) and all >your >nutritional levels show up on the CPT blood test (Comprehensive Metabolic >Panel) > >The antidepressants these days are often used to treat migraine which I >know >you get. So you might want to talk to your neurologist about being put onto >Amitriptyline tablets. This is usually the first medication they start >migrainers on. It is a mild tri-cyclic antidepressive, not a very good >antidepressive, but excellent for other neurological conditions especially >migraines. > >Just a thought! > >Love Aisha. > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 > From: DiDomenico <vanessadd@...> > > Tina, > " being very tired can also mean a lack of a nutrient, " " You could also be suffering from depression, often caused by medicatons and by pain itself! Try a good antidepressant first if you EVER feel very sad, hopeless, suicidal, or cry for any little thing. " Good Point! I was actually anaemic due to a severe iron deficiency, and I was as sick as shit! This does show up in the CBC blood test (Complete Blood Count) and all your nutritional levels show up on the CPT blood test (Comprehensive Metabolic Panel) The antidepressants these days are often used to treat migraine which I know you get. So you might want to talk to your neurologist about being put onto Amitriptyline tablets. This is usually the first medication they start migrainers on. It is a mild tri-cyclic antidepressive, not a very good antidepressive, but excellent for other neurological conditions especially migraines. Just a thought! Love Aisha. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2000 Report Share Posted March 20, 2000 Well Im not exactly sure how you would say it went. I still havent received any relief and it looks like it is going to be at least a month before they see me again. This dr wants me to do a migraine diary and go through my records before she prescribes anything and she also told me that I would probably never get away from the pain. I am not sure if she is going to help me or not. Time will tell I guess. Thanks for checking on me. Tina >From: " Aisha Elderwyn " <aisha@...> >Reply-onelist > " Being Sick Community List " <onelist> >Subject: Tina >Date: Tue, 21 Mar 2000 10:41:33 +1100 > >Hi there sweet one > >How did your doctors appt. go?? Successful? I know you've had a tough few >days of it, so let me know how you are ok? > >Thinking of you *hug* > >Love Aisha. > ___________________________________ > >*Art* >http://www.elderwyn.com/gallery > >*Auctions* >http://cgi.ebay.com/aw-cgi/eBayISAPI.dll?ViewItem & item=286607834 > >*Music* >http://www.elderwyn.com/compositions > >*Interactive Fiction* >http://www.elderwyn.com/fiction > >*Inspiration* >http://www.elderwyn.com/inspiration > >*Medical Resources and Support* >http://www.elderwyn.com/medicallinks > >*Aisha Elderwyn* >http://www.elderwyn.com/aisha > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2000 Report Share Posted March 20, 2000 Hi Tina, " she also told me that I would probably never get away from the pain. " Nice to see she has a positive out look on life isnt it. Well hon, I hope things improve. What sort of a doctor was she? Can you not take Asprin or something??? And I assume some of these pratts have bothered to run blood tests? You are in my thoughts sweet one. Keep fighting, and remember, if your instincts tell you she is a pratt... see another (i know thats *YET* another) Dr. Hang in there hon - and keep us posted ok! Love Aisha. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2000 Report Share Posted March 21, 2000 No she sure didnt ask to run any tests on me which really shocked me. She did say she didnt want to put me through things that I have already been through. Thanks for thinking of me. I really have appreciated all of your support. Tina >From: " Aisha Elderwyn " <aisha@...> >Reply-onelist ><onelist> >Subject: Re: Tina >Date: Tue, 21 Mar 2000 17:44:49 +1100 > >Hi Tina, > > " she also told me that I would probably never get away from the pain. " > >Nice to see she has a positive out look on life isnt it. Well hon, I hope >things improve. What sort of a doctor was she? Can you not take Asprin or >something??? And I assume some of these pratts have bothered to run blood >tests? > >You are in my thoughts sweet one. Keep fighting, and remember, if your >instincts tell you she is a pratt... see another (i know thats *YET* >another) Dr. > >Hang in there hon - and keep us posted ok! > >Love Aisha. > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2000 Report Share Posted March 21, 2000 I think Ill make it ha ha. I would love to find another dr right now though cause I hurt so bad these days. Its hard to get general house work done let alone anything else. My Fibro is killing me. Migraine after migraine to-I think its cause Im stressed out over the pain and not being able to get pain meds. I am hopeful though that soon-real soon-someone will let me in on a good secret to finding that special dr who really will care about people in pain and not be afraid of treating it properly. I am sure Ill make it until then-hateful as hell-but Ill make it ha ha. Thanks for hanging in there with me. I could use all the positive support I can get right now. Tina >From: " Aisha Elderwyn " <aisha@...> >Reply-onelist ><onelist> >Subject: Re: Tina >Date: Wed, 22 Mar 2000 11:02:54 +1100 > > >Hi Tina *hug* > > " No she sure didnt ask to run any tests on me which really shocked me. " > >You and me both! I am always wary now of Dr's who dont run tests. It is >almost as if their ego takes over and they can diagnose you without any >onfo >to go on! > > " She did say she didnt want to put me through things that I have already >been through. " > >Well that is good - at least there is some sense there!! > > " Thanks for thinking of me. I really have appreciated all of your > support. " > >Thats what we are here for sweet one!! *HUG* So how are you doing? Are you >ok with this new Dr?? Are you still in alot of pain? What do you think is >going on? (questions questions!!) > >Sending you a huge huggle!! *HUGGLE* > >With love >Aisha. > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2000 Report Share Posted March 21, 2000 Thanks I would appreciate a list of headache dr ha ha. Thanks again for caring. Tina >From: " Aisha Elderwyn " <aisha@...> >Reply-onelist ><onelist> >Subject: Re: Tina >Date: Wed, 22 Mar 2000 13:29:09 +1100 > >Hey Tina, > >I have a list of people who specialise in headaches (curing them not >prolonging them!! OR causing them! LOL) so I shall send that too .... > >If I think of anything else I'll let you know... go to see another DR... >that Monday dr sounds like a border line pratt to me... > > " hateful as hell " > ><wicked grin> > >Go Gurl!!!!!!!!! > > " I could use all the positive support I can get right now. Tina " > >You have it in abundance sweet one! We love you!!! > >*HUGS* > >(Tis a very huggable day to day!!!) > >Love Aisha. > > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2000 Report Share Posted March 21, 2000 Hi Tina *hug* " No she sure didnt ask to run any tests on me which really shocked me. " You and me both! I am always wary now of Dr's who dont run tests. It is almost as if their ego takes over and they can diagnose you without any onfo to go on! " She did say she didnt want to put me through things that I have already been through. " Well that is good - at least there is some sense there!! " Thanks for thinking of me. I really have appreciated all of your support. " Thats what we are here for sweet one!! *HUG* So how are you doing? Are you ok with this new Dr?? Are you still in alot of pain? What do you think is going on? (questions questions!!) Sending you a huge huggle!! *HUGGLE* With love Aisha. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2000 Report Share Posted March 21, 2000 Hey Tina, I have a list of people who specialise in headaches (curing them not prolonging them!! OR causing them! LOL) so I shall send that too .... If I think of anything else I'll let you know... go to see another DR... that Monday dr sounds like a border line pratt to me... " hateful as hell " <wicked grin> Go Gurl!!!!!!!!! " I could use all the positive support I can get right now. Tina " You have it in abundance sweet one! We love you!!! *HUGS* (Tis a very huggable day to day!!!) Love Aisha. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 Tina: My thoughts and prayers are with you and your family right now. I know how hard it is to try to be " normal " and calm while waiting for test results and to such. It must be hard for your husband to be sick when he's never had to really experience it before and it must be so hard on you to find the strength to deal with it all. Again, my thoughts and prayers are with you right now. --,8,dysgammaglobulinemia, etc... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 ---- Since we are just starting to put pieces together something interesting might be linked and I didn't even realize. Kaylin has enormous gaps between all her teeth. She has tiny little teeth. I always told her she had large enough gaps that she could call gopher's through those teeth, then she would try to whistle through the teeth and laugh. I was praying that as her adult teeth came in it would shove them all together and she would have beautiful teeth, instead we are finding that she is missing teeth. They never developed. She was never put to bed with a bottle and was complete bottle broke by age of six. I always thought it was strange but now I wonder if it has anything to do with the IGA?? Might be interesting to check out. Thyroid levels can affect a whole lot of things but not sure about the pancreatic levels. Let me do some checking. Hugs, --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.338 / Virus Database: 189 - Release Date: 3/14/02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Hi Kristi! I was going to just email you privately, but your email address didn't show up all the way. Mine is jadesmom85251@.... Both his tort and plagio is mild. He didn't get diagnosed with it till he was a little over 8 months old! So our whole process began almost 3 months ago as well! Chase is in a Star Band. Our dr. prescribed a DOC band, but the insurance (Cigna) took 6 weeks just to deny the referral. They're contracted with a place called Hanger, so I didn't want to waste anymore time going through an appeal process and just went to who they were contracted with. I've been happy with them so far. We're located in sdale, Arizona. So far it hasn't been too difficult. I'm worried about how he's going to do sleeping at night with it. Any advice or tricks on that? Tina Chase, 11 months with mild tort & plagio Jade, 3 1/2 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Tina, your email didn't come up all the way, either! Is it ? Mine is hotmail.com hasn't spent an entire night in it yet, just naps. They haven't been a problem at all. I just tried to dress him in cool clothes and lay a blanket over him. He usually kicks the blanket off at some point, but he doesn't seem to be overly hot or cold. Do you know Chase's measurements? was CVA 10mm, CBA 7mm, and Facial 4mm Kristi (4) and (11 3/4mos) OH > Hi Kristi! I was going to just email you privately, but your email > address didn't show up all the way. Mine is > jadesmom85251@y... Both his tort and plagio is mild. > He didn't get diagnosed with it till he was a little over 8 months > old! So our whole process began almost 3 months ago as well! > Chase is in a Star Band. Our dr. prescribed a DOC band, but the > insurance (Cigna) took 6 weeks just to deny the referral. They're > contracted with a place called Hanger, so I didn't want to waste > anymore time going through an appeal process and just went to > who they were contracted with. I've been happy with them so far. > We're located in sdale, Arizona. > > So far it hasn't been too difficult. I'm worried about how he's > going to do sleeping at night with it. Any advice or tricks on that? > > Tina > Chase, 11 months with mild tort & plagio > Jade, 3 1/2 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Tina: I'm so sorry about the loss of your daughter. Just wanted to share what I know, I was told Group B Strep can only be contracted by the baby while in the birth canal during the birth. The baby would not become sick until a bit after the birth, and they said most babies don't even catch it. So I would assume the stillbirth had absolutely nothing to do with any bacteria you may possibly have been carrying. Hope that helps -- (mom to , age 3-1/2. Currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) P.S. Yes, here I am typing at 9am when I was supposed to be at the hospital at 7am. Been delayed by labor and delivery twice so far this morning (they're full up), don't know if or when it will be today. Sigh. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 , Hang in there. . .my cousin went in for a scheduled induction only to be sent home twice. He made an appearance two days later on his own Ray, mother to Tabitha (age 7), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (16 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2002 Report Share Posted September 21, 2002 Thanks , Hope by now you have a healthy bub, Tina Re: Tina Tina: I'm so sorry about the loss of your daughter. Just wanted to share what I know, I was told Group B Strep can only be contracted by the baby while in the birth canal during the birth. The baby would not become sick until a bit after the birth, and they said most babies don't even catch it. So I would assume the stillbirth had absolutely nothing to do with any bacteria you may possibly have been carrying. Hope that helps -- (mom to , age 3-1/2. Currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) P.S. Yes, here I am typing at 9am when I was supposed to be at the hospital at 7am. Been delayed by labor and delivery twice so far this morning (they're full up), don't know if or when it will be today. Sigh. Quote Link to comment Share on other sites More sharing options...
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