Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 Ok, so then your TSH was a 2.5 or a 3.5. How then was it and by who, that dertermined that you have either central or secondary hypothyroidism? How did they determine this, since you have a pretty fair TSH reading? Without thyroid meds, in the "natural" state, the TSH is going to be suppressed, right? I would like to know who the doc is who determined this so long ago, this is VERY strange indeed! Was it just an offhand remark made by a doctor. Your testing doesn't look it at all, not with the TSH. What was the TSH at that time? And yes, your Free T4 is high. You have to have certain other testing done with MRI/Scan to determine these things because they are going to look for a small pituitary tumor to rule tumor out, right away. Re: new member I have not had any type of testing on my pituitary or hypothalamus. could this also have made the goiter grow so quickly. This goiter appeared literally overnight and is the size of a ping pong ball. I told the doc that and he doesn't believe me. he tells me that it was a slow grow and I just didn't notice. There is no possible way I would not have noticed it. It appeared where my nodule was on my right lobe. Now sometimes I feel tenderness on the left lobe. these are the other results I just got faxed to me: TSH- either 2.005 or 3.005 (can't read it too well) (.350-5.500) thyroxine-17.4 or 7.4 can't read (4.5-12.0) - pretty sure it is 17.4 because it was flaggedT3 uptake- 38 (24-39) T4 free- 2.55 (.061-1.760 sorry about some of the numbers but they were't very clear on the fax I can't understand why they did not give me the other flagged results( TSH, T3, T4) I am not concerned about TSH from what you have told me. My next move is to find an good endo- this site gave me one name. does the endo also check for pituitary and hypothalamus? thanks for the info! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 I saw Dr. sheridan with Hotze. He took blood and I guess looking at my symptoms deteremined the diagnosis. I also have adrenal fatigue and estrogen dominant and am taking bio-identical hormones for it. I fasted and they drew blood in the pm 2 weeks ago and got these latest lab results. I don't know what my TSH was the first time for diagnosis it was 4 years ago. wrote: Ok, so then your TSH was a 2.5 or a 3.5. How then was it and by who, that dertermined that you have either central or secondary hypothyroidism? How did they determine this, since you have a pretty fair TSH reading? Without thyroid meds, in the "natural" state, the TSH is going to be suppressed, right? I would like to know who the doc is who determined this so long ago, this is VERY strange indeed! Was it just an offhand remark made by a doctor. Your testing doesn't look it at all, not with the TSH. What was the TSH at that time? And yes, your Free T4 is high. You have to have certain other testing done with MRI/Scan to determine these things because they are going to look for a small pituitary tumor to rule tumor out, right away. Re: new member I have not had any type of testing on my pituitary or hypothalamus. could this also have made the goiter grow so quickly. This goiter appeared literally overnight and is the size of a ping pong ball. I told the doc that and he doesn't believe me. he tells me that it was a slow grow and I just didn't notice. There is no possible way I would not have noticed it. It appeared where my nodule was on my right lobe. Now sometimes I feel tenderness on the left lobe. these are the other results I just got faxed to me: TSH- either 2.005 or 3.005 (can't read it too well) (.350-5.500) thyroxine-17.4 or 7.4 can't read (4.5-12.0) - pretty sure it is 17.4 because it was flaggedT3 uptake- 38 (24-39) T4 free- 2.55 (.061-1.760 sorry about some of the numbers but they were't very clear on the fax I can't understand why they did not give me the other flagged results( TSH, T3, T4) I am not concerned about TSH from what you have told me. My next move is to find an good endo- this site gave me one name. does the endo also check for pituitary and hypothalamus? thanks for the info! Ahhh...imagining that irresistible "new car" smell? Check out new cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2007 Report Share Posted May 18, 2007 Hi Amy, I'm near Eldridge & Memorial. I've only just seen Dr. Brown at Endocrinology Associates of Houston. He seemed friendly and helpful so we'll see what happens from here. For now he just started me on .088 of Synthroid and I have to go back in a month. I'll be sure to update as things progress. Thanks, Amy wrote: Hi, !What part of Houston are you in? We're in a number of places. . .I'm in Clear Lake, and there are quite a few folks down here. This is THE place to be for help with thyroid issues--we learn about this stuff constantly. Me and Hashi's, not so much. . .but soon I'm going to read more on it, I should know this stuff.Also, wherever you are, we would love to hear about the doctor you are seeing, how you're being treated, etc. And of course, I can't shut up. . .so I'll stop here.Amy the RedheadThe House of Felines>> Hi Everyone, > > I just wanted to introduce myself. I was just diagnosed with Hashimoto's a few weeks ago and have only had one visit with an endo. I'm hoping to get as much information about my condition as possible before my next visit. > > Thanks,> > Rayne> Houston, TX > > Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2007 Report Share Posted May 18, 2007 I'd ask if he is going to look only at the TSH and not your symptoms and Free's too. Is he willing to add T3? Kate At 02:20 PM 5/18/2007, you wrote: >Hi Amy, > >I'm near Eldridge & Memorial. I've only just seen Dr. Brown at >Endocrinology Associates of Houston. He seemed friendly and helpful so >we'll see what happens from here. For now he just started me on .088 of >Synthroid and I have to go back in a month. I'll be sure to update as >things progress. > >Thanks, > > > > > >Amy wrote: >Hi, ! > >What part of Houston are you in? We're in a number of places. . .I'm >in Clear Lake, and there are quite a few folks down here. > >This is THE place to be for help with thyroid issues--we learn about >this stuff constantly. Me and Hashi's, not so much. . .but soon I'm >going to read more on it, I should know this stuff. > >Also, wherever you are, we would love to hear about the doctor you are >seeing, how you're being treated, etc. > >And of course, I can't shut up. . .so I'll stop here. > >Amy the Redhead >The House of Felines > > > > > > Hi Everyone, > > > > I just wanted to introduce myself. I was just diagnosed with >Hashimoto's a few weeks ago and have only had one visit with an endo. >I'm hoping to get as much information about my condition as possible >before my next visit. > > > > Thanks, > > > > Rayne > > Houston, TX > > > > > > > >Looking for a deal? ><http://us.rd.yahoo.com/evt=47094/*http://farechase.yahoo.com/;_ylc=X3oDMTFicDJ\ oNDllBF9TAzk3NDA3NTg5BHBvcwMxMwRzZWMDZ3JvdXBzBHNsawNlbWFpbC1uY20->Find >great prices on flights and hotels with Yahoo! FareChase. >No virus found in this incoming message. >Checked by AVG Free Edition. >Version: 7.5.467 / Virus Database: 269.7.3/809 - Release Date: 5/17/2007 >5:18 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2007 Report Share Posted May 19, 2007 Dawne, Dina WHite I think is a former doc from Hotze- and she accepts various insurance, and prices are reasonable. She doesnt push supplements and things, unless you want them, she does have bioident. hormones available if you need or want them. I just had some blood work done for my thyroid, and she didnt even run tsh- just the frees. Based on those, she upped my dose. I thought that was an interesting approach. So she had me double my armour based on recent labs. She also discovered I am really low in Vit D and asked me to take supplement for that. Very nice lady. So far, so good. I return in 3 months. My one complaint- I had to wait a God awful amount of time to get my labs back! --- Dawne Baumann wrote: > whoops! I mean Amy. I live in your area and need > info from you. sorry > > Dawne Baumann wrote: > hi , > I live in your area.. Do you have a good doc to > see for thyroid that prescribes the armour? I have > been driving to katy to hotze and would like to find > a doc closer to home and not as expensive. > thanks > Dawne > > Amy wrote: > Hi, ! > > What part of Houston are you in? We're in a number > of places. . .I'm > in Clear Lake, and there are quite a few folks down > here. > > This is THE place to be for help with thyroid > issues--we learn about > this stuff constantly. Me and Hashi's, not so much. > . .but soon I'm > going to read more on it, I should know this stuff. > > Also, wherever you are, we would love to hear about > the doctor you are > seeing, how you're being treated, etc. > > And of course, I can't shut up. . .so I'll stop > here. > > Amy the Redhead > The House of Felines > > > > > > Hi Everyone, > > > > I just wanted to introduce myself. I was just > diagnosed with > Hashimoto's a few weeks ago and have only had one > visit with an endo. > I'm hoping to get as much information about my > condition as possible > before my next visit. > > > > Thanks, > > > > Rayne > > Houston, TX > > > > > > > > > > --------------------------------- > Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's > economy) at Yahoo! Games. > > > > > --------------------------------- > Yahoo! oneSearch: Finally, mobile search that gives > answers, not web links. ________________________________________________________________________________\ ____Be a better Heartthrob. Get better relationship answers from someone who knows. Yahoo! Answers - Check it out. http://answers.yahoo.com/dir/?link=list & sid=396545433 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2007 Report Share Posted May 19, 2007 if its Jeff Brown, I think if you do a search for him on google, there is something written on him from a doctor report website- a site patients right in to rate their doctors, but the name of website escapes me right now (brain fog alert). --- Kate Guynn wrote: > I'd ask if he is going to look only at the TSH and > not your symptoms and > Free's too. Is he willing to add T3? > > Kate > > At 02:20 PM 5/18/2007, you wrote: > >Hi Amy, > > > >I'm near Eldridge & Memorial. I've only just seen > Dr. Brown at > >Endocrinology Associates of Houston. He seemed > friendly and helpful so > >we'll see what happens from here. For now he just > started me on .088 of > >Synthroid and I have to go back in a month. I'll be > sure to update as > >things progress. > > > >Thanks, > > > > > > > > > > > >Amy wrote: > >Hi, ! > > > >What part of Houston are you in? We're in a number > of places. . .I'm > >in Clear Lake, and there are quite a few folks down > here. > > > >This is THE place to be for help with thyroid > issues--we learn about > >this stuff constantly. Me and Hashi's, not so much. > . .but soon I'm > >going to read more on it, I should know this stuff. > > > >Also, wherever you are, we would love to hear about > the doctor you are > >seeing, how you're being treated, etc. > > > >And of course, I can't shut up. . .so I'll stop > here. > > > >Amy the Redhead > >The House of Felines > > > > > > > > > > Hi Everyone, > > > > > > I just wanted to introduce myself. I was just > diagnosed with > >Hashimoto's a few weeks ago and have only had one > visit with an endo. > >I'm hoping to get as much information about my > condition as possible > >before my next visit. > > > > > > Thanks, > > > > > > Rayne > > > Houston, TX > > > > > > > > > > > > > >Looking for a deal? > ><http://us.rd.yahoo.com/evt=47094/*http://farechase.yahoo.com/;_ylc=X3oDMTFicDJ\ oNDllBF9TAzk3NDA3NTg5BHBvcwMxMwRzZWMDZ3JvdXBzBHNsawNlbWFpbC1uY20->Find > > >great prices on flights and hotels with Yahoo! > FareChase. > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.467 / Virus Database: 269.7.3/809 - > Release Date: 5/17/2007 > >5:18 PM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2007 Report Share Posted May 19, 2007 Who me...little ol me? Kate At 10:47 AM 5/19/2007, you wrote: >Why Kate---you're just too backwards and shy. Hehe. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2007 Report Share Posted June 13, 2007 Hi : I'm so sorry I am way behind in posts. I'm sure you've had your hearing and how did it go? I got a favorable decision. Lou metzdorf@... wrote: >Hi Lou, they told me the hearing is coming up soon, but I don't have a date yet. How did yours go? What all did you have to do at court? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 WELCOME WENDY!!!!!!!!!! We are always happy to make new friends here and you are no exception! Of course the backside of that is we arn't happy that you have an illness that brings you here but I believe even given the situation, you can always use friends that genuinely care about you and are here for you. Let me share briefly where I am coming from. I met my husband while playing a game of online euchre. We developed into a great friendship through the process of getting to know each other ONLINE and I call it from the INSIDE OUT. It was several years before we met in person and after our friendship had developed into deep caring for each other. I knew there was nothing I couldn't tell him...it was a love unconditionally. (still is after marriage of 8yrs) Any other type of relationship could not endure my illness and increased needs but one developed as ours did, we are the perfect person for each other and eager to meet whatever needs arise. I believe with all my heart from that time on, that those relationships that are developed from the inside out are strong, enduring what life throws and we are thankful for each other every single day! I believe without a doubt, this group is getting to know me better than my own family has ever known. I am thankful for each and everyone of you with hopes that I can help in some small way to make another's life easier or at least more full than it was before you came here. God Bless You and I'm glad you chose us to share yourself with! > > Hi everyone! > > My name is and I am a new member of the group. I am in a middle > of a move, so I haven't been able to post, but I wanted to introduce > myself. > > I am in my early 40s and have been dealing with fibromyalgia since > 2001. I had a good career before then that came to a screeching halt. > I am married and have a standard poodle that works as my service dog. > I am training his replacement at the moment who is also a standard > poodle. I plan to retire my first service dog in a few years (and he > will remain a member of our family). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 Welcome to the group , My name Is Sandrea and I've Had chronic fatigue syndrome diagnosed for just about three years now. I also have fibromyalgia. I haven't worked since the time I was diagnosed and my diagnosis followed a diagnosis of a movement disorder caused by a medication that I had withdrawn from. I also have no thyroid because I had thyroid cancer many years ago. It sounds like you have a lot going on and I think you will learn a lot from this group. Stick with us and you will get to know us better. We are all very supportive of one another and are very talkative about what is going on in our lives. I am kind of tired right now so I won't write a whole lot but you will learn more about me and about the rest of us over time. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 90 mg is not a very large dose of Armour. Is there a reason that you did not increase the Armour? Were you intolerant? How did you feel on 90mg? Of course, as Jan says, what everyone needs is highly individual. Kim new member Hello... I come to this group searching for support and feedback. I've been treated for Hashimotos almost a year - first with Armour, then Synthroid and then Armour again. With each labwork, my tsh was increasing and my doctors suggested increasing med. This last time, it was highest yet at 9.9 and my doctor suggested increasing armour to 90mg. I chose to get off Armour in hopes my tsh will return to 3.5 (original level) out of confusion and frustration and mainly because I put off conception to get my thyroid stabilized and my biological clock is ticking. I've read alot online today and maybe getting off Armour wasn't good decision. If I had a frame of reference that 90mg Armour isn't high dosage and 9.9 tsh isn't extreme level and that even though my tsh is increasing each month, it will decrease and won't take years, I would feel more calm and less reactive to the bad news with each lab result. I look forward to your thoughts! Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 thank you for responding! i did feel better on 60mg (highest dose so far), so much so that i thought my levels would be normal. when i learned my tsh was higher than ever, i reacted and stopped armour. now i'm thinking i should increase.Kim Hanson wrote: 90 mg is not a very large dose of Armour. Is there a reason that you didnot increase the Armour? Were you intolerant? How did you feel on 90mg?Of course, as Jan says, what everyone needs is highly individual.Kim-----Original Message-----From: Texas_Thyroid_Groups [mailto:Texas_Thyroid_Groups ] On Behalf Of kimberlyamclarkeSent: Thursday, August 16, 2007 3:30 PMTo: Texas_Thyroid_Groups Subject: new memberHello...I come to this group searching for support and feedback. I've been treated for Hashimotos almost a year - first with Armour, then Synthroid and then Armour again. With each labwork, my tsh was increasing and my doctors suggested increasing med. This last time, it was highest yet at 9.9 and my doctor suggested increasing armour to 90mg. I chose to get off Armour in hopes my tsh will return to 3.5 (original level) out of confusion and frustration and mainly because I put off conception to get my thyroid stabilized and my biological clock is ticking. I've read alot online today and maybe getting off Armour wasn't good decision. If I had a frame of reference that 90mg Armour isn't high dosage and 9.9 tsh isn't extreme level and that even though my tsh is increasing each month, it will decrease and won't take years, I would feel more calm and less reactive to the bad news with each lab result.I look forward to your thoughts!Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 Hi everyone, I'm a new member, but been lurking for a while. My official diagnosis is CFS/ME, and onset was probably 10 years ago. I follow a cycle of remission and relapse, with mostly relapses the last year or two. Symptoms are getting more severe recently, and now I'm wondering if I have the correct diagnosis. I just had a brain MRI, and won't be surprised if it shows MS. Anyway, my major battle right now is mobility, especially walking outside my home. I don't want to be home-bound, especially with 3 young kids. Anyone with experience of using wheelchairs or canes? Input welcomed as to which will be the most useful in which situations. Thanks, Naomi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2007 Report Share Posted August 23, 2007 Thanks for the warm welcome, everyone! Glad to hear that It's not so extreme to use a wheelchair or cane. I'm planning on trying the wheelchairs at the mall, next time I go with someone. I figure that the cane might be helpful for when I feel well enough to go out by myself, to preserve my energy, and a wheelchair will help when I'm not bed-ridden, but not up to walking, or when I have to go out even when I'm not up to it, eg drs appts. Does anyone know if there is a link between CFS/ME and MS? Also, has anyone experienced nuerological side effects from Cipralex? Especially after being on it for a while, or when the dose is being tapered? We're wondering if some of my new symptoms may be related to medication issues. Thanks again for the welcome, for sharing your experiences, and -in advance - for answering my other questions. Naomi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2007 Report Share Posted August 24, 2007 Vicki, Email me on this if you want but what insurance do you have? Do you have medicare? I have found a no nonsence company that will do everything necessary to bill your insurance at no cost to you whatsoever on a motorized chair with two motors/batteries with varible speeds. Mine is a dream and is called " Pronto " . I have since recommended others to this one specific guy that will take five min on the phone with you and the rest is history. He can normally get you preapproved within a day and next thing you know..you have it! All chairs are not created equally as was pointed out by someone here in forums, otherwise I would have gotten some rinkiedink scooter. I expect to have this for a lifetime, it's a cadillac of the line. Let me know if you need the specifics on who to contact...there is no dragging feet with him! Take care! wrote: > > Welcome to the group! I also have problems getting around outside, even though I love being out there. I have both a cane and a wheelchair. I mainly use the cane when outside in the yard. I have several different places set up in my yard (swing, patio chairs, etc) so no matter which part of the yard I am in.. there is somewhere to sit if necessary. I mainly use the wheelchair for outings such as grocery shopping, but have to have someone push me as I don't have enough strength in my arms to do this myself. Am trying to get an electric, but that doesn't seem to be coming along very fast. > Hope this helps! > Vickie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2007 Report Share Posted August 24, 2007 Vicki, Email me on this if you want but what insurance do you have? Do you have medicare? I have found a no nonsence company that will do everything necessary to bill your insurance at no cost to you whatsoever on a motorized chair with two motors/batteries with varible speeds. Mine is a dream and is called " Pronto " . I have since recommended others to this one specific guy that will take five min on the phone with you and the rest is history. He can normally get you preapproved within a day and next thing you know..you have it! All chairs are not created equally as was pointed out by someone here in forums, otherwise I would have gotten some rinkiedink scooter. I expect to have this for a lifetime, it's a cadillac of the line. Let me know if you need the specifics on who to contact...there is no dragging feet with him! Take care! wrote: > > Welcome to the group! I also have problems getting around outside, even though I love being out there. I have both a cane and a wheelchair. I mainly use the cane when outside in the yard. I have several different places set up in my yard (swing, patio chairs, etc) so no matter which part of the yard I am in.. there is somewhere to sit if necessary. I mainly use the wheelchair for outings such as grocery shopping, but have to have someone push me as I don't have enough strength in my arms to do this myself. Am trying to get an electric, but that doesn't seem to be coming along very fast. > Hope this helps! > Vickie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2007 Report Share Posted August 24, 2007 --HI Dearest Alywin! Glad to have you back and hope the move has not taken too much out of you! I've been limited in posting lately with my cycle of fatigue that I did not realise until I made it back into my bed! (was on couch near DH downstairs) I fell out as soon as I got up here and that was around 6pm and did not wake until the phone rang at 3:30pm the next day! I have been having alot of problems with my right hand swelling up hard all the way up to the right elbow. Yesterday upon waking, it lacked all color and quite literally looked like a " corps " hand. It was very cool to touch and waxy looking. I have been told it's the " heart " that is causing this one sided episode and I've been getting it alot! My ankles, feet and knees are adema free with no meds so I've been happy for that! It is amazing how much my chair helps me pace energy and that's just talking about the indoors! Outside it's a dream come true! Of course I walk as much as possible without putting myself in jepardy. I do near areas that if I should fall...I would still be safe. Again on the MRI, I sure hope this time it shows something (we all look for that infinitive test to prove what we already know) but keep in the back of your mind...many times they find nothing. Are you having the more detailed MRI that some speak of or just a regular MRI? If I knew the name of this more specific MRI meantioned here in our forums before, I would request one myself. I am careful anymore as to what " tests " I partake in as if it's not going to show anything...what good is it in attempting to convince those doctors that still don't believe in your diagnosis? My doctor told me out of the blue yesterday that he wanted me to know just how sweet I am and how much he feels priviliged to be working with me on my health issues. (talk about floored!) He said he's been meaning to tell me that for some time. Being willing to try new things is the only way I have gained ground in the suffering of this DD and trust goes both ways I guess. I also went to my MD again after going through full withdrawals getting off my morphine patches to take something orally as I throw away more patches than I use. The cost of the D things are around 900 bucks a month for 10! My M.D started me on a very low dose of oxy and then doubled it with the withdrawals. The dose was not covering me from first dose to second so I knew it needed more adjustment but his response through a nurse was less than what I would have expected so I made an appointment the next day to " get on the same page! " I do that when I feel there may be a nurse taking things into her own hands or not giving the Doctor the accurate message etc. I value my Doctors and will do all I can to insure our communications are always open! Gosh Girl! How long winded I've become! I hope your doing well really! Let the rest wait for a few days to see how you are going to react to what you have already done before going forward. (I always fall apart AFTER) God Bless Yah GF! - In CFAlliance , " J. Catchpole " wrote: > > Hi and Welcome Naomi! First of all, I really empathize with you, as someone > who got ME when my kids were 3 & 5. Second, don't make the mistake of > thinking that ME is less disabling than MS, or less " neurological " . Both > have a similar range of severity and variable rate of progress, and an > overlapping set of symptoms. Even MRI findings can be similar to an > uneducated eye. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2007 Report Share Posted August 24, 2007 -Hi and Welcome Naomi! I'm sorry for my recent rants, you must think me completely off my rocker lmao. I get that way from time to time on issues that would do me such harm that it makes me angry that somebody uses their so called credentials to tell us what we need to do. What they think they know does not change one aspect of what we live with every day. I would much rather they attempt to do some sort of research whereby they poll us, the patients on issues that effect US before making suggestions on treatment that would only put us down deeper into this illness. For me, and the progression of this DD, Once you cross that line into new symptoms...you don't go back. I am careful about what I do that could push me into the next phase and am very resentful as to how this disease has be mishandled so far. I sure hope you find this forum useful as many of us here have and do daily WE put it out there (right or wrong) to shake the bars we are held captive in. The sharing of information from those like us is the best treatment I can get. I hope you hang around and share things that you have experienced so that perhaps we can learn from you as we have each other! God Bless and I look forward to getting to know you better! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2007 Report Share Posted August 24, 2007 -Hi and Welcome Naomi! I'm sorry for my recent rants, you must think me completely off my rocker lmao. I get that way from time to time on issues that would do me such harm that it makes me angry that somebody uses their so called credentials to tell us what we need to do. What they think they know does not change one aspect of what we live with every day. I would much rather they attempt to do some sort of research whereby they poll us, the patients on issues that effect US before making suggestions on treatment that would only put us down deeper into this illness. For me, and the progression of this DD, Once you cross that line into new symptoms...you don't go back. I am careful about what I do that could push me into the next phase and am very resentful as to how this disease has be mishandled so far. I sure hope you find this forum useful as many of us here have and do daily WE put it out there (right or wrong) to shake the bars we are held captive in. The sharing of information from those like us is the best treatment I can get. I hope you hang around and share things that you have experienced so that perhaps we can learn from you as we have each other! God Bless and I look forward to getting to know you better! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2007 Report Share Posted August 24, 2007 Thanks .. and will keep this in mind. I didn't mean to imply that my doc was dragging his feet or anything. It is actually me that is holding up the whole thing. My doc told me to make an appointment with the social worker and they would work together to get whatever I needed. I just haven't had the energy to make another trip there to see her. Sometimes things just take more energy than I have. Thanks for the advice, and if i have problems down the road I will let you know and appreciate the offer for help! Thanks! Vickie wrote: Vicki, Email me on this if you want but what insurance do you have? Do you have medicare? I have found a no nonsence company that will do everything necessary to bill your insurance at no cost to you whatsoever on a motorized chair with two motors/batteries with varible speeds. Mine is a dream and is called " Pronto " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2007 Report Share Posted August 24, 2007 Thanks .. and will keep this in mind. I didn't mean to imply that my doc was dragging his feet or anything. It is actually me that is holding up the whole thing. My doc told me to make an appointment with the social worker and they would work together to get whatever I needed. I just haven't had the energy to make another trip there to see her. Sometimes things just take more energy than I have. Thanks for the advice, and if i have problems down the road I will let you know and appreciate the offer for help! Thanks! Vickie wrote: Vicki, Email me on this if you want but what insurance do you have? Do you have medicare? I have found a no nonsence company that will do everything necessary to bill your insurance at no cost to you whatsoever on a motorized chair with two motors/batteries with varible speeds. Mine is a dream and is called " Pronto " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2007 Report Share Posted August 25, 2007 My mother died from MS and I have CFS and Fibro. I have heard of others with MS in the family who have CFS as well. It seems there must be some sort of relationship in there somewhere but I don't know anything more. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2007 Report Share Posted August 25, 2007 I really envy you the doctors you have. I had a recent visit with my internist that put me into tears. I asked about Dysautonomia and having a tilt table test. She was totally emphatic that I can not have this as it is congenital (which it is not always). In any case, I told her I was frustrated to not be able to find an explanation for my inability to stand and walk without becoming ill. She just said I may not get an explanation and that I have been extensively tested and more or less just live with it. I also told her about symptoms I experienced while being tested for asthma (which I have just been diagnosed with after 8 months of symptoms). She just said that's what happens when you go to lots of specialists and have to have nasty tests. I was really shocked at her rudeness and sarcasm. She is not normally like that though I don't believe she understands CFS much. In any case, I've had it with her and am looking for a new doc. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2007 Report Share Posted August 26, 2007 Sandrea, I am so sorry you had that experience with your doctor. Expecially when she's an internist and has more specialized training. There is no excuse for that behavior from a dr. They all take the Hypocratic oath to " do no harm " . Well, in my opinion, most of these dr's we go to for help and don't listen or blow us off, are definitely doing us harm, if nothing else, to our psyche. I worked at a primary care office with 10 docs and we had our good ones and bad ones. Taking 8 months to diagnose asthma is unexceptable. With the proper testing, it should have taken no time at all to diagnose and get you on the proper treatment. People DIE from that. That is really scary. I can't help but think of my mom, who complained for over 2 yrs about not being able to breath. Her doctor kept telling her she was having panic attacks and giving her Xanax. Then this past February, she couldn't breath at at, was diagnosed the next day with lung cancer, which had spread thru out her entire body and she died 2 weeks later. Since my brother pulled some crap in her Hospice room right after she died, we haven't been able to talk about it. My mom had her body donated to a teaching hospital in Augusta, GA, so we've never had a service or anything for her. They can hold her body for up to 3 yrs, then she will be cremated. They do have a memorial service once a yr for the family members. This year it happened right after she died. My brother did do a memorial service for her, but sent text messages to all of us on a Friday, that it would be on Monday at his church. He knew good and well that we didn't have anytime to make arrangements to get off of work. My dtr and I live in FL and he's up in Villa Rica, GA - almost to Alabama. We've had no closure, and I can tell it's starting to affect me more and more with the FMS and CFS. Good for you in deciding to find another doctor. Shop around and put them in the " being interviewed " position. That puts the power back in your hands and puts them on notice that you know your own body, have done your research and know to pay attention when something doesn't feel right. Most of the good/understanding doctors will not have a problem with this and will see you without pmt. I'm sorry, I didn't mean to make this about my issue's. It just makes me so angry about these doctors that I've all but given up. Darlena Re: New Member I really envy you the doctors you have. I had a recent visit with my internist that put me into tears. I asked about Dysautonomia and having a tilt table test. She was totally emphatic that I can not have this as it is congenital (which it is not always). In any case, I told her I was frustrated to not be able to find an explanation for my inability to stand and walk without becoming ill. She just said I may not get an explanation and that I have been extensively tested and more or less just live with it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2007 Report Share Posted August 27, 2007 I think many of us are familiar with what you are describing Lee. I have been a more recent member than some others, but I've never seen anyone post and not receive support. So when you are ready to take the risk, we will be happy to listen and share what we can and give you support. Sandrea Quote Link to comment Share on other sites More sharing options...
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