Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Kate! Your such a sweetie! Thankyou for being you! I wont forget yogurt.I swear. My pain node,lol, is on the left! Maybe you were having TN pain? I hope not! I hope its going away or at least getting better. hugz,cassy --- MSersLife wrote: > > Re: Re: BAck from Doc > > > Cassy~You won't believe this--but I thought I woke up today, and felt t > he same exact swelling and pain you describe in the same location--and is i > t on your left or right? Mine was on the right...but...I was dreaming! It w > as so real, that when I woke up, I was still holding my jaw! I think I was > feeling for you! Hope you are better real soon--and don't forget what I sai > d about yogurt, ok? love ya, kate > > > > Hey Sharon. No.I dont have a fever or anything. It was > really swollen.Today its not as bad. It feels tender. > And hurts. I thought it was just some freak thing and > was gone this morning. Lol. Then I felt around and the > lump was still there.Im going to read about the > lidocaine patches.I have only read some. I hope your > doing ok.I seen the Harry Potter book at Walgreens > today,and thought of you.:)My sis watched the kids and > when me and my mom got there to get the kids they were > swimn so we sat and talked for a bit. Then outta > nowere Gabby starts screaming in pain.She was on Pays > back so I thought her lifevest was stuck or sumthn so > I had pay swim her to the edge and we got her out,She > was stung by a wasp! My mom had her bee/wasp mini > kit.lol.She busted it out and me,my sis,and my mom had > to hold her down so my mom could get the stinger > out.It was HUGE!Thank god for moms! She got it out so > quick gabby didnt have a reaction.But she > screamed!OMG!and she said she is never going swimming > again! Lol. Hugz, > cassy > > Recent Activity > a.. 1New Members > Visit Your Group > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 I have that also. They just give me a whole bunch of diagnosis. in TexasTrista wrote: Cassy, have you ever researched Chronic Fatigue Immune Dysfunction Syndrome? ~Trista~********************************When the world says, "give up,"Hope whispers, "try it one more time." BAck from Doc I seen my doc today. My lymph nodes in that area areswollen.He gave me 21 days of omoxicillin.Mythroat,ears,nose and chest were fine.He said sometimesit happens from bacteria too.He is seeing me back in 3wks. To make sure it goes down.He says hes gonna keepa close eye on it due to the fact that usually it isjust from infection but to make sure cuz sometimes itcan be more serious like cancers and stuff.(witch hedosnt think is the case) I told him I cant take theoxycodone.So im stayn with vicodin and hes tryn to getmy insurance to pay for lidocaine patches,ofther wiseit will cost 178$ for a mons supply.He is filling outthe paperwork and is goin to try and fight them forit.I asked if it would be worth the price.I cantafford it but anything to lessen this pain.He said ifthey say no I can buy 1 patch,see how it works andthen decide if I wanna pay so much.I guess itl takeabout a week for my insurance to decide. Im verybehind on posts.I hope you are all well today andhaving a good day,hugz,cassy__________________________________________________________Get the Yahoo! toolbar and be alerted to new email wherever you're surfing.http://new.toolbar.yahoo.com/toolbar/features/mail/index.php ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 What other dx's? ~Trista~********************************When the world says, "give up,"Hope whispers, "try it one more time." BAck from Doc I seen my doc today. My lymph nodes in that area areswollen.He gave me 21 days of omoxicillin.Mythroat,ears,nose and chest were fine.He said sometimesit happens from bacteria too.He is seeing me back in 3wks. To make sure it goes down.He says hes gonna keepa close eye on it due to the fact that usually it isjust from infection but to make sure cuz sometimes itcan be more serious like cancers and stuff.(witch hedosnt think is the case) I told him I cant take theoxycodone.So im stayn with vicodin and hes tryn to getmy insurance to pay for lidocaine patches,ofther wiseit will cost 178$ for a mons supply.He is filling outthe paperwork and is goin to try and fight them forit.I asked if it would be worth the price.I cantafford it but anything to lessen this pain.He said ifthey say no I can buy 1 patch,see how it works andthen decide if I wanna pay so much.I guess itl takeabout a week for my insurance to decide. Im verybehind on posts.I hope you are all well today andhaving a good day,hugz,cassy__________________________________________________________Get the Yahoo! toolbar and be alerted to new email wherever you're surfing.http://new.toolbar.yahoo.com/toolbar/features/mail/index.php ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 What are all of your dxs, '?Sharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. BAck from Doc I seen my doc today. My lymph nodes in that area areswollen.He gave me 21 days of omoxicillin. Mythroat,ears, nose and chest were fine.He said sometimesit happens from bacteria too.He is seeing me back in 3wks. To make sure it goes down.He says hes gonna keepa close eye on it due to the fact that usually it isjust from infection but to make sure cuz sometimes itcan be more serious like cancers and stuff.(witch hedosnt think is the case) I told him I cant take theoxycodone.So im stayn with vicodin and hes tryn to getmy insurance to pay for lidocaine patches,ofther wiseit will cost 178$ for a mons supply.He is filling outthe paperwork and is goin to try and fight them forit.I asked if it would be worth the price.I cantafford it but anything to lessen this pain.He said ifthey say no I can buy 1 patch,see how it works andthen decide if I wanna pay so much.I guess itl takeabout a week for my insurance to decide. Im verybehind on posts.I hope you are all well today andhaving a good day,hugz,cassy____________ _________ _________ _________ _________ _________ _Get the Yahoo! toolbar and be alerted to new email wherever you're surfing.http://new.toolbar. yahoo.com/ toolbar/features /mail/index. php ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Possible Dysautonomia, Possible MS, Fibromyalgia, CFIDS, Myofascial pain disorder, Ataxia, Tremor disorder. See, I'm a mess. No matter what, I'm screwed. (Sorry for the language) There's no other ways to express it ' in TexasTrista wrote: What other dx's? ~Trista~********************************When the world says, "give up,"Hope whispers, "try it one more time." BAck from Doc I seen my doc today. My lymph nodes in that area areswollen.He gave me 21 days of omoxicillin.Mythroat,ears,nose and chest were fine.He said sometimesit happens from bacteria too.He is seeing me back in 3wks. To make sure it goes down.He says hes gonna keepa close eye on it due to the fact that usually it isjust from infection but to make sure cuz sometimes itcan be more serious like cancers and stuff.(witch hedosnt think is the case) I told him I cant take theoxycodone.So im stayn with vicodin and hes tryn to getmy insurance to pay for lidocaine patches,ofther wiseit will cost 178$ for a mons supply.He is filling outthe paperwork and is goin to try and fight them forit.I asked if it would be worth the price.I cantafford it but anything to lessen this pain.He said ifthey say no I can buy 1 patch,see how it works andthen decide if I wanna pay so much.I guess itl takeabout a week for my insurance to decide. Im verybehind on posts.I hope you are all well today andhaving a good day,hugz,cassy__________________________________________________________Get the Yahoo! toolbar and be alerted to new email wherever you're surfing.http://new.toolbar.yahoo.com/toolbar/features/mail/index.php ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Re: BAck from Doc Hey `~Listen...don't mind the language at all...You CAN choose to feel "screwed"...or, not. We, none of us, are promised a rose garden here...It is daunting to be told all those things you have, and 'possible' MORE, as in MS or dysautonomia. It may be the smallest droplet of 'promise' in the pool of your sorrow and sadness and worry--but we are each here for you. To hold you up. To nurture you. To, perhaps not physically, but in outreach, wipe each tear away. Then there is your Creator. He is also, your sustainer. If it were not for God, for all your prayers, I wouldn't be able to be getting through these horrific days of TN pain. I'm talking--looking at pills as my only way out, kind of days. And yet, everyone has been SO here for me. And God. He has to get the largest portion of praise and credit. I have to tell you, dear Chuck has been a real source of strength for me as well. He has really reached out to me, and helped to further anchor me. Not trying to make light of anything you've said here at all, `. I wonder if some of those things, for instance 'tremor disorder' and ataxia, might very well be part of MS, if it is in fact MS you have, as opposed to separate disorders. Are there plans underway for further testing on the first 2 possibles, to try to narrow it down, rule them in or out? I'm here for you. Stand firm. I'm standing in the gap for you--praying love, kate Possible Dysautonomia, Possible MS, Fibromyalgia, CFIDS, Myofascial pain disorder, Ataxia, Tremor disorder. See, I'm a mess. No matter what, I'm screwed. (Sorry for the language) There's no other ways to express it .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Oh my goodness, ! You surely have a lot of stuff going on there. Is it possible that you DON'T have Dysautonomia, MS, CFIDS, Myofascial pain disorder, Ataxia, Tremor disorder? Or at least not all of them at the same time? Are they trying to rule any of them out? If not...I totally understand your language. Heck, I'd probably be cussing like a sailor too! Love and blessings...Val Heck is what people say when they don't believe in Gosh! LOL BAck from Doc I seen my doc today. My lymph nodes in that area areswollen.He gave me 21 days of omoxicillin.Mythroat,ears,nose and chest were fine.He said sometimesit happens from bacteria too.He is seeing me back in 3wks. To make sure it goes down.He says hes gonna keepa close eye on it due to the fact that usually it isjust from infection but to make sure cuz sometimes itcan be more serious like cancers and stuff.(witch hedosnt think is the case) I told him I cant take theoxycodone.So im stayn with vicodin and hes tryn to getmy insurance to pay for lidocaine patches,ofther wiseit will cost 178$ for a mons supply.He is filling outthe paperwork and is goin to try and fight them forit.I asked if it would be worth the price.I cantafford it but anything to lessen this pain.He said ifthey say no I can buy 1 patch,see how it works andthen decide if I wanna pay so much.I guess itl takeabout a week for my insurance to decide. Im verybehind on posts.I hope you are all well today andhaving a good day,hugz,cassy__________________________________________________________Get the Yahoo! toolbar and be alerted to new email wherever you're surfing.http://new.toolbar.yahoo.com/toolbar/features/mail/index.php ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.2/931 - Release Date: 8/1/07 4:53 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 I 2nd what Kate said. I've got several things going on too. I know it's hard. I have to look at it as something that is helping me grow and strengthening me. ((())) ~Trista~********************************When the world says, "give up,"Hope whispers, "try it one more time." BAck from Doc I seen my doc today. My lymph nodes in that area areswollen.He gave me 21 days of omoxicillin.Mythroat,ears,nose and chest were fine.He said sometimesit happens from bacteria too.He is seeing me back in 3wks. To make sure it goes down.He says hes gonna keepa close eye on it due to the fact that usually it isjust from infection but to make sure cuz sometimes itcan be more serious like cancers and stuff.(witch hedosnt think is the case) I told him I cant take theoxycodone.So im stayn with vicodin and hes tryn to getmy insurance to pay for lidocaine patches,ofther wiseit will cost 178$ for a mons supply.He is filling outthe paperwork and is goin to try and fight them forit.I asked if it would be worth the price.I cantafford it but anything to lessen this pain.He said ifthey say no I can buy 1 patch,see how it works andthen decide if I wanna pay so much.I guess itl takeabout a week for my insurance to decide. Im verybehind on posts.I hope you are all well today andhaving a good day,hugz,cassy__________________________________________________________Get the Yahoo! toolbar and be alerted to new email wherever you're surfing.http://new.toolbar.yahoo.com/toolbar/features/mail/index.php ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hey ! I know you got alot going on. Your not screwed. You may be sick but you keep on truckin. ~wink-wink~. I feel like that. But for some reason I feel like I would feel better with at least 1 diagnosis,so im glad you have something on paper saying what you have. Im not sure whats worse. Im thinking if it were reversed it probly be just as bad but then I would wish I didnt know.lol. It is possible a few of those could be linked from the main disease. I know you dont know for sure yet but maybe the dysautonomia or ms could be causing the other things,like the tremors(I have those too,dont they suck!)lol. Or even the fibro. Well,lets just get more problems wile they take there sweet time dxing us. Hey,like they say whatever dosnt kill us only makes us stronger. Lol. I go for my table tilt test tomorow.ugh! Have you had yours?I guess I could ask the other group what to expect hu? What happened at your doc appt? hugz,cassy --- MSersLife wrote: > Possible Dysautonomia, Possible MS, Fibromyalgia, CFIDS, Myofascial pain disorder, Ataxia, Tremor disorder. See, I'm a mess. No matter what, I'm screwed. (Sorry for the language) There's no other ways to express it > > ' in Texas > > Trista wrote: > What other dx's? > ~Trista~ > ******************************** > When the world says, " give up, " > Hope whispers, " try it one more time. " > BAck from Doc > > > I seen my doc today. My lymph nodes in that area are > swollen.He gave me 21 days of omoxicillin.My > throat,ears,nose and chest were fine.He said sometimes > it happens from bacteria too.He is seeing me back in 3 > wks. To make sure it goes down.He says hes gonna keep > a close eye on it due to the fact that usually it is > just from infection but to make sure cuz sometimes it > can be more serious like cancers and stuff.(witch he > dosnt think is the case) I told him I cant take the > oxycodone.So im stayn with vicodin and hes tryn to get > my insurance to pay for lidocaine patches,ofther wise > it will cost 178$ for a mons supply.He is filling out > the paperwork and is goin to try and fight them for > it.I asked if it would be worth the price.I cant > afford it but anything to lessen this pain.He said if > they say no I can buy 1 patch,see how it works and > then decide if I wanna pay so much.I guess itl take > about a week for my insurance to decide. Im very > behind on posts.I hope you are all well today and > having a good day,hugz, > cassy > > __________________________________________________________ > Get the Yahoo! toolbar and be alerted to new email wherever you're surfing. > http://new.toolbar.yahoo.com/toolbar/features/mail/index.php > > > > > > > > > ' in Texas > Courage is not being fearless, courage is facing your fears and not running for cover! > > > > > > > > ' in Texas > Courage is not being fearless, courage is facing your fears and not running for cover! ________________________________________________________________________________\ ____ Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. http://tv.yahoo.com/collections/222 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2007 Report Share Posted August 3, 2007 No, I'm just lucky and have everything which each thing makes other things worse. 'Val Lee wrote: Oh my goodness, ! You surely have a lot of stuff going on there. Is it possible that you DON'T have Dysautonomia, MS, CFIDS, Myofascial pain disorder, Ataxia, Tremor disorder? Or at least not all of them at the same time? Are they trying to rule any of them out? If not...I totally understand your language. Heck, I'd probably be cussing like a sailor too! Love and blessings...Val Heck is what people say when they don't believe in Gosh! LOL BAck from Doc I seen my doc today. My lymph nodes in that area areswollen.He gave me 21 days of omoxicillin.Mythroat,ears,nose and chest were fine.He said sometimesit happens from bacteria too.He is seeing me back in 3wks. To make sure it goes down.He says hes gonna keepa close eye on it due to the fact that usually it isjust from infection but to make sure cuz sometimes itcan be more serious like cancers and stuff.(witch hedosnt think is the case) I told him I cant take theoxycodone.So im stayn with vicodin and hes tryn to getmy insurance to pay for lidocaine patches,ofther wiseit will cost 178$ for a mons supply.He is filling outthe paperwork and is goin to try and fight them forit.I asked if it would be worth the price.I cantafford it but anything to lessen this pain.He said ifthey say no I can buy 1 patch,see how it works andthen decide if I wanna pay so much.I guess itl takeabout a week for my insurance to decide. Im verybehind on posts.I hope you are all well today andhaving a good day,hugz,cassy__________________________________________________________Get the Yahoo! toolbar and be alerted to new email wherever you're surfing.http://new.toolbar.yahoo.com/toolbar/features/mail/index.php ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.2/931 - Release Date: 8/1/07 4:53 PM ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2007 Report Share Posted August 3, 2007 , I know how frustrating it is, don't worry about the language- we all think in those terms from time to time. Inconclusive test results are one of the more frustrating things in life. The only thing worse is a doctor who decides there is nothing wrong at all just because the tests he ordered don't show anything. Probably means he just hasn't figured out the right test do do yet. Or from what I am reading it takes a while before enough evidence is gathered to prove MS. I've had a lot of doctors over the years and a few that state that no one person can actually have all these different 'rare' health issues. I'm 48 years old and since I was l8 I've had so many differnt unusual health issues. Part of my puzzle was answered aprox 3 years ago when I found out I had Bartter's syndrom- rare kidney disorder. I found this out only because I mentioned something to the cardiologist a few months after she didn't find any heart problems that she had been expecting from my symptoms. It can be frustrating because I had been complaining about having trouble keeping my potassium levels at 3.8 or above for 5 years and had been on potassium prescription for 5 years. I had mentioned HOW and WHEN I first was diganosed with low potassium levels to at least 5 different doctors (that includes the one for surgery) the exact same origion for the problem. But finally I mentioned it to a doctor that keyed in on a possible reason. At least one had mentioned checking up on Mag levels- but none of them went on to the next step of actually ordering a test- just we'll we will try prescription of potassium and see what happens. Or they upped the dose I was taking. A couple even mentioned Bartters and Gitlemans , but because it is so rare(1.7 people per million) they promptly dismissed the idea. The next time I had seen my cardiologist after being diagnosed, she told me that based on my cardio test results and the problems I had and what it actually turned out to be, that she sent 4 more of her patients over to the kidney specialist for futher testing. Also there are other things that can cause low Mag levels besides my disease. And if your mag is low then you can have symptoms that mimic heart conditions. I still remember the shock in her voice when she read out loud the results of my stress test. 'My heart patients don't have stress tests like this, most are at level 2 or 3 and you went to level 6' And we only stopped the test then because I was having asthma related problems . So many times doctors seem to say oh the problems you are having could be this or this or this, but the doctor never follows up on doing tests for any of the conditions or set out to eliminate any of the possibles. Keep after it, someday the right doctor will have the right 'aha' moment. Debbie and Ian McKinley (13 yrs BMD)no litters from Kansas http://home.hit.net/~dimck/ Brighteye Bushy Tail Gretchen CD,CGC 11/11/92 - 10/07/03. Swiss Stars Harvest Moon CD,CGC, DD 6/l8/93- 5/9/04 Swiss Star's Maximum Risk 09/15/02 Sammy (rescue/rehome) (rescue) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2007 Report Share Posted August 3, 2007 Hey . What about your lesion? They canceled my table tilt test today. But I went through my record from the specialist(neuro) and I had a few papers i had never seen in there. I think maybe they may have handed em to me or my mom on my last visit and were put in my folder. Anyways my BP dosnt go up when I stand it goes down! Nice! I thought it went up. Then it also mentions tremors and alot of other stuff and actually says dysautonomia. Im a dork! I had no idea they were in there! How are you doing?I read how your car had the leak and you missed your appt. Did you reschedule? And are they fixn the damage to your car? Im prayn for ya always! luv ya! Cassy --- MSersLife wrote: > They are thinking more dysautonomia than MS and all those things are symptoms or disorders that go with it. I forgot the gastroparesis and neurogenic bladder and orthostatic hypotension. The disease is like MS, you just rule out everything else. The only definitive dx is autopsy at death. I'm okay, just take everything with a grain of sugar and salt. Been up all last noight because my catheter wasn't draining. Thought it was me at first till I changed catheter's and I think it's going to cooperate now. > > > ' in Texas > > Kate Rothschild wrote: > > Re: BAck from Doc > > > Hey `~Listen...don't mind the language at all...You CAN choose to feel " screwed " ...or, not. We, none of us, are promised a rose garden here...It is daunting to be told all those things you have, and 'possible' MORE, as in MS or dysautonomia. It may be the smallest droplet of 'promise' in the pool of your sorrow and sadness and worry--but we are each here for you. To hold you up. To nurture you. To, perhaps not physically, but in outreach, wipe each tear away. Then there is your Creator. He is also, your sustainer. If it were not for God, for all your prayers, I wouldn't be able to be getting through these horrific days of TN pain. I'm talking--looking at pills as my only way out, kind of days. And yet, everyone has been SO here for me. And God. He has to get the largest portion of praise and credit. I have to tell you, dear Chuck has been a real source of strength for me as well. He has really reached out to me, and helped to further anchor me. > Not trying to make light of anything you've said here at all, `. I wonder if some of those things, for instance 'tremor disorder' and ataxia, might very well be part of MS, if it is in fact MS you have, as opposed to separate disorders. Are there plans underway for further testing on the first 2 possibles, to try to narrow it down, rule them in or out? > I'm here for you. Stand firm. I'm standing in the gap for you--praying > love, kate > > Possible Dysautonomia, Possible MS, Fibromyalgia, CFIDS, Myofascial pain disorder, Ataxia, Tremor disorder. See, I'm a mess. No matter what, I'm screwed. (Sorry for the language) There's no other ways to express it > > > . > > > > > > > > > > ' in Texas > Courage is not being fearless, courage is facing your fears and not running for cover! ________________________________________________________________________________\ ____ Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. http://get.games.yahoo.com/proddesc?gamekey=monopolyherenow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2007 Report Share Posted August 4, 2007 Car is fixed. The decrease in blood pressure is a symptom of dysautonomia so that's why they ordered the tilt test to get you a definite dx of orthostatic hypotension or postural orthostatic tachacardia syndrome (POTS)which is a MSA dx. ' I'm waiting on my tilt table because I keep hoping Robbie will get a job with insurance. They already know I have it. What a pair we are. As rare as this disease is and we already knew each other!cassandra workmn wrote: Hey . What about your lesion? They canceled mytable tilt test today. But I went through my recordfrom the specialist(neuro) and I had a few papers ihad never seen in there. I think maybe they may havehanded em to me or my mom on my last visit and wereput in my folder. Anyways my BP dosnt go up when Istand it goes down! Nice! I thought it went up. Thenit also mentions tremors and alot of other stuff andactually says dysautonomia. Im a dork! I had no ideathey were in there! How are you doing?I read how yourcar had the leak and you missed your appt. Did youreschedule? And are they fixn the damage to your car?Im prayn for ya always!luv ya! Cassy--- MSersLife <dixmstx>wrote:> They are thinking more dysautonomia than MS and allthose things are symptoms or disorders that go withit. I forgot the gastroparesis and neurogenic bladderand orthostatic hypotension. The disease is like MS,you just rule out everything else. The only definitivedx is autopsy at death. I'm okay, just take everythingwith a grain of sugar and salt. Been up all lastnoight because my catheter wasn't draining. Thought itwas me at first till I changed catheter's and I thinkit's going to cooperate now.> > > ' in Texas> > Kate Rothschild <katelloydkidzoptonline (DOT) net> wrote:> > Re: BAck from Doc> > > Hey `~Listen...don't mind the language atall...You CAN choose to feel "screwed"...or, not. We,none of us, are promised a rose garden here...It isdaunting to be told all those things you have, and'possible' MORE, as in MS or dysautonomia. It may bethe smallest droplet of 'promise' in the pool of yoursorrow and sadness and worry--but we are each here foryou. To hold you up. To nurture you. To, perhaps notphysically, but in outreach, wipe each tear away. Thenthere is your Creator. He is also, your sustainer. Ifit were not for God, for all your prayers, I wouldn'tbe able to be getting through these horrific days ofTN pain. I'm talking--looking at pills as my only wayout, kind of days. And yet, everyone has been SO herefor me. And God. He has to get the largest portion ofpraise and credit. I have to tell you, dear Chuck hasbeen a real source of strength for me as well. He hasreally reached out to me, and helped to further anchorme. > Not trying to make light of anything you've saidhere at all, `. I wonder if some of those things,for instance 'tremor disorder' and ataxia, might verywell be part of MS, if it is in fact MS you have, asopposed to separate disorders. Are there plansunderway for further testing on the first 2 possibles,to try to narrow it down, rule them in or out?> I'm here for you. Stand firm. I'm standing in thegap for you--praying> love, kate> > Possible Dysautonomia, Possible MS, Fibromyalgia,CFIDS, Myofascial pain disorder, Ataxia, Tremordisorder. See, I'm a mess. No matter what, I'mscrewed. (Sorry for the language) There's no otherways to express it> > > .> > > > > > > > > > ' in Texas > Courage is not being fearless, courage is facingyour fears and not running for cover!__________________________________________________________Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.http://get.games.yahoo.com/proddesc?gamekey=monopolyherenow ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2007 Report Share Posted August 4, 2007 Hey ! I know! Its crazy.So,pots,is it a msa disease?Guess what?I was looking in my paperwork to find my TTT info and I found my records from the specialty neuro! I didnt even know I had em,I think maybe on my other visit there they musta gave em and my mom or sis musta put em in my folder without realizing what they were!Ahh! Anyways,im goin to type what it says. Orthostatic BP checks revealed that the pts BP actually wile supine for 15 mins.was 134/86.With standing,her BP actually droped to 96/55,and this was associated with a pulse change,and it also says that I have features consistent with a dysautonomia and I also have small fiber neuropathy.And it states my tremors,numbness,etc. That he saw. I will be praying Robbie gets one with insurance .Im so sorry you are going threw all this.I wish we were closer to eachother.We are like 2 peas in a pod! Luv ya! cassy --- MSersLife wrote: > Car is fixed. The decrease in blood pressure is a symptom of dysautonomia so that's why they ordered the tilt test to get you a definite dx of orthostatic hypotension or postural orthostatic tachacardia syndrome (POTS)which is a MSA dx. > > ' > > I'm waiting on my tilt table because I keep hoping Robbie will get a job with insurance. They already know I have it. What a pair we are. As rare as this disease is and we already knew each other! > > cassandra workmn wrote: > Hey . What about your lesion? They canceled my > table tilt test today. But I went through my record > from the specialist(neuro) and I had a few papers i > had never seen in there. I think maybe they may have > handed em to me or my mom on my last visit and were > put in my folder. Anyways my BP dosnt go up when I > stand it goes down! Nice! I thought it went up. Then > it also mentions tremors and alot of other stuff and > actually says dysautonomia. Im a dork! I had no idea > they were in there! How are you doing?I read how your > car had the leak and you missed your appt. Did you > reschedule? And are they fixn the damage to your car? > Im prayn for ya always! > luv ya! Cassy > --- MSersLife > wrote: > > They are thinking more dysautonomia than MS and all > those things are symptoms or disorders that go with > it. I forgot the gastroparesis and neurogenic bladder > and orthostatic hypotension. The disease is like MS, > you just rule out everything else. The only definitive > dx is autopsy at death. I'm okay, just take everything > with a grain of sugar and salt. Been up all last > noight because my catheter wasn't draining. Thought it > was me at first till I changed catheter's and I think > it's going to cooperate now. > > > > > > ' in Texas > > > > Kate Rothschild wrote: > > > > Re: BAck from Doc > > > > > > Hey `~Listen...don't mind the language at > all...You CAN choose to feel " screwed " ...or, not. We, > none of us, are promised a rose garden here...It is > daunting to be told all those things you have, and > 'possible' MORE, as in MS or dysautonomia. It may be > the smallest droplet of 'promise' in the pool of your > sorrow and sadness and worry--but we are each here for > you. To hold you up. To nurture you. To, perhaps not > physically, but in outreach, wipe each tear away. Then > there is your Creator. He is also, your sustainer. If > it were not for God, for all your prayers, I wouldn't > be able to be getting through these horrific days of > TN pain. I'm talking--looking at pills as my only way > out, kind of days. And yet, everyone has been SO here > for me. And God. He has to get the largest portion of > praise and credit. I have to tell you, dear Chuck has > been a real source of strength for me as well. He has > really reached out to me, and helped to further anchor > me. > > Not trying to make light of anything you've said > here at all, `. I wonder if some of those things, > for instance 'tremor disorder' and ataxia, might very > well be part of MS, if it is in fact MS you have, as > opposed to separate disorders. Are there plans > underway for further testing on the first 2 possibles, > to try to narrow it down, rule them in or out? > > I'm here for you. Stand firm. I'm standing in the > gap for you--praying > > love, kate > > > > Possible Dysautonomia, Possible MS, Fibromyalgia, > CFIDS, Myofascial pain disorder, Ataxia, Tremor > disorder. See, I'm a mess. No matter what, I'm > screwed. (Sorry for the language) There's no other === Message Truncated === ________________________________________________________________________________\ ____ 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 August 4, 2007 Report Share Posted August 4, 2007 Hi Cassy and '~~Every email between you two I find another term to look up! You gals are wearing out my fingers! lol Here's another interesting site:http://www.neurologychannel.com/msa/It says they have a Multisystem Atrophy Forum that you may be interested in. love to both of youSharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Re: BAck from Doc > > > > > > Hey `~Listen. ..don't mind the language at > all...You CAN choose to feel "screwed"... or, not. We, > none of us, are promised a rose garden here...It is > daunting to be told all those things you have, and > 'possible' MORE, as in MS or dysautonomia. It may be > the smallest droplet of 'promise' in the pool of your > sorrow and sadness and worry--but we are each here for > you. To hold you up. To nurture you. To, perhaps not > physically, but in outreach, wipe each tear away. Then > there is your Creator. He is also, your sustainer. If > it were not for God, for all your prayers, I wouldn't > be able to be getting through these horrific days of > TN pain. I'm talking--looking at pills as my only way > out, kind of days. And yet, everyone has been SO here > for me. And God. He has to get the largest portion of > praise and credit. I have to tell you, dear Chuck has > been a real source of strength for me as well. He has > really reached out to me, and helped to further anchor > me. > > Not trying to make light of anything you've said > here at all, `. I wonder if some of those things, > for instance 'tremor disorder' and ataxia, might very > well be part of MS, if it is in fact MS you have, as > opposed to separate disorders. Are there plans > underway for further testing on the first 2 possibles, > to try to narrow it down, rule them in or out? > > I'm here for you. Stand firm. I'm standing in the > gap for you--praying > > love, kate > > > > Possible Dysautonomia, Possible MS, Fibromyalgia, > CFIDS, Myofascial pain disorder, Ataxia, Tremor > disorder. See, I'm a mess. No matter what, I'm > screwed. (Sorry for the language) There's no other === Message Truncated === ____________ _________ _________ _________ _________ _________ _ 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 Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2007 Report Share Posted August 4, 2007 Hi Cassy and '~~Every email between you two I find another term to look up! You gals are wearing out my fingers! lol Here's another interesting site:http://www.neurologychannel.com/msa/It says they have a Multisystem Atrophy Forum that you may be interested in. love to both of youSharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Re: BAck from Doc > > > > > > Hey `~Listen. ..don't mind the language at > all...You CAN choose to feel "screwed"... or, not. We, > none of us, are promised a rose garden here...It is > daunting to be told all those things you have, and > 'possible' MORE, as in MS or dysautonomia. It may be > the smallest droplet of 'promise' in the pool of your > sorrow and sadness and worry--but we are each here for > you. To hold you up. To nurture you. To, perhaps not > physically, but in outreach, wipe each tear away. Then > there is your Creator. He is also, your sustainer. If > it were not for God, for all your prayers, I wouldn't > be able to be getting through these horrific days of > TN pain. I'm talking--looking at pills as my only way > out, kind of days. And yet, everyone has been SO here > for me. And God. He has to get the largest portion of > praise and credit. I have to tell you, dear Chuck has > been a real source of strength for me as well. He has > really reached out to me, and helped to further anchor > me. > > Not trying to make light of anything you've said > here at all, `. I wonder if some of those things, > for instance 'tremor disorder' and ataxia, might very > well be part of MS, if it is in fact MS you have, as > opposed to separate disorders. Are there plans > underway for further testing on the first 2 possibles, > to try to narrow it down, rule them in or out? > > I'm here for you. Stand firm. I'm standing in the > gap for you--praying > > love, kate > > > > Possible Dysautonomia, Possible MS, Fibromyalgia, > CFIDS, Myofascial pain disorder, Ataxia, Tremor > disorder. See, I'm a mess. No matter what, I'm > screwed. (Sorry for the language) There's no other === Message Truncated === ____________ _________ _________ _________ _________ _________ _ 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 Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2007 Report Share Posted August 5, 2007 And here I thought n was the link lady! 'Sharon Marsden wrote: Hi Cassy and '~~Every email between you two I find another term to look up! You gals are wearing out my fingers! lol Here's another interesting site:http://www.neurologychannel.com/msa/It says they have a Multisystem Atrophy Forum that you may be interested in. love to both of youSharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Re: BAck from Doc> > > > > > Hey `~Listen. ..don't mind the language at> all...You CAN choose to feel "screwed"... or, not.We,> none of us, are promised a rose garden here...It is> daunting to be told all those things you have, and> 'possible' MORE, as in MS or dysautonomia. It may be> the smallest droplet of 'promise' in the pool ofyour> sorrow and sadness and worry--but we are each herefor> you. To hold you up. To nurture you. To, perhaps not> physically, but in outreach, wipe each tear away.Then> there is your Creator. He is also, your sustainer.If> it were not for God, for all your prayers, Iwouldn't> be able to be getting through these horrific days of> TN pain. I'm talking--looking at pills as my onlyway> out, kind of days. And yet, everyone has been SOhere> for me. And God. He has to get the largest portionof> praise and credit. I have to tell you, dear Chuckhas> been a real source of strength for me as well. Hehas> really reached out to me, and helped to furtheranchor> me. > > Not trying to make light of anything you've said> here at all, `. I wonder if some of thosethings,> for instance 'tremor disorder' and ataxia, mightvery> well be part of MS, if it is in fact MS you have, as> opposed to separate disorders. Are there plans> underway for further testing on the first 2possibles,> to try to narrow it down, rule them in or out?> > I'm here for you. Stand firm. I'm standing in the> gap for you--praying> > love, kate> > > > Possible Dysautonomia, Possible MS, Fibromyalgia,> CFIDS, Myofascial pain disorder, Ataxia, Tremor> disorder. See, I'm a mess. No matter what, I'm> screwed. (Sorry for the language) There's no other=== Message Truncated === ____________ _________ _________ _________ _________ _________ _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 Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV. ' in Texas Courage is not being fearless, courage is facing your fears and not running for cover! Quote Link to comment Share on other sites More sharing options...
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