Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Hi Amy, Glad to have you aboard and welcome to the group!! Bill 315/290/225 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2000 Report Share Posted July 28, 2000 Hi Maddy, I am glad you found us sorry you had to. You seem like a young lady who knows a lot about your condition, so I am going to tell you a few things which may or may not make sense to you. If they don't, write back and I'll try to explain in depth. When a person has asthma there is a series of events they biochemically go through to have a full blown asthma attack. It is called the " asthma cascade " . Part of the " asthma cascade " is the called the " mast cell cascade " . Asthmatics and Urticarians both go through the " mast cell cascade " . The airway obstruction and swelling that a asthmatic gets is part of the " mast cell cascade " and the swelling and angioedema that a urticarian gets is also part of the " mast cell cascade. " So, biochemically they aren't too far off. That is why many urticarians are treated with asthmatic meds like, accolate, singular and ketitofen and yes prednisone. Most of us here would tell you you would be well advised to get off the prednisone if you can. If you go to websites on asthma you will read where some asthmatics are using NSAIDs to replace the prednisone just like urticarians. There is evidence through medical journal reports that this might be a very good alternative for asthmatics. DO not try this without a DRs helps, because some urticarians will react severely!! Also, most urticarians are not too keen on immuno-suppressive meds to treat their illness. I have read the journal articles on this and the reveiw is mixed, it depends on what type of urticaria you have............and from your message, I don't know, if you know. Also there is some new interesting news from the Mayo that links some asthma with fungal infection. You might want to try a yeast free diet and see if this helps. Elaine ewal3955@... who is on our other board urticariaegroups which I recommend you join since most of us have moved there...........can help you with the details of this diet. Hey, this is a very simple non-evasive way to see if you can be helped by an anti-fungal med or not. Hugs, Myra hi all >Urticaria > >Hi there... > I introduced myself about a week??? ago. I am still struggling. I went >to the Mayo Clinic about two years ago as I have severe steroid-dependent >asthma (and CU), and a doctor there was doing some promising work with >steroid-dependent asthmatics. Then I developed CU, it's been a year, and I >just went back to the clinic and he put me on alpha-interferon (injectable) >for the CU. He's had a lot of success with it, but I have to say, it is >really difficult. I had my third treatment tonight, and my fever is spiking >at 103'. I pray the side-effects lessen. I am 24 and have been on >prednisone for nine years. I have all the side-effects, and it's getting to >a point where the steroid side-effects are fairly disastrous. I have been on >the prednisone in teh past year for the hives and for swelling, angioedema, >etc. It's the only thing that seems to control them--I've tried high doses >of all the antihistamines, etc. I am on allegra, doxepin, zantac, prednisone >in addition to eight other asthma drugs. Does anyone have any helpful hints? > what about for the itching...i'm going to go insane! I start school in >three weeks (i'm a social work student) and i need to get this under better >control. Did anyone try allegra? i think zyrtec works better, but it knocks >me out sooo much. I need to be functionable! Has anyone found a great >doctor or hospital in the US? I've exhausted my resources in Chicago, and I >like my doc at Mayo, but the interferon is nasty. We can't figure out what >causes them...has anyone? So...anyway. Thanks for listening. I'm going to >try tapering the prednisone next week.....slowly....so that should be >difficult (withdrawal) ugh. anyway, i love hearing from people who >understand. It's a big relief. > >take care >maddy > > >______________________________________________________________________ >To unsubscribe, write to urticaria-unsubscribe@... > >FREE SHIPPING OR FREE SUNGLASSES at wonderfulbuys.com! We're giving >free shipping on all our great buys plus get free sunglasses. Also, >register to win a Total Gym 3000 ($1000.00 retail value). Click now, >limited time offer. > >http://www.bcentral.com/listbot/wonderfulbuys > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2000 Report Share Posted July 29, 2000 Welcome Trish, Regarding your fibromayglia (sp?), I have thryoid problems and on one of those sites (http://thyroid.about.com/health/thyroid/library/weekly/aa072500a.htm) they said that Chronic Fatigue Syndrome and Fibromayglia did not exist until the early 80's when doctors were trained to diagnose thyroid problems solely by bloodwork instead of looking at the symptoms of the patient. I have changed my thyroid medicine and increased the dosage and I feel a lot better. I still have some hives, but not as many (I have also changed to a less yeast diet.) I'm sure they have tested your thryoid levels. I think it is the first thing they look at for young women who feel sick, but you may want to do some more research and look at your thyroid a little closer as a component of this. I have also found that getting a lot of sleep helps my hives. And from what I have read about lupus, it sounds like they might be similar problems in my case. What did the doctors say you should do to prevent getting lupus or how will you know when it had developed? Thanks, > >Reply-To: urticariaegroups >To: urticariaegroups >Subject: Hi All >Date: Fri, 28 Jul 2000 18:30:07 -0400 > >hi everyone, > whats new? let me introduce my self. i am (trish) i am 22 years >old i have chronic urticaria since i was 17 years old 5 long and hadr >years. they first thought i had lupus then they told me i had made it up. >finally i found someone who told me that i had this disease and also told >me i had a 60% chance getting lupus latter in my life. > well just recently i was having a hard time moving and picking things >up, the N.P. then told me itwas the antihistamine so she changed it well >i went for the 3 month check up and the doctor just informed me that i >have fibiromyalgia he want to make sure none of the tissue is damaged. >what happens if it is?????? has anybody felt like they are paralized >because you barely move. thats how i feel. i will not get me down > > GOD BLESS YOU ALL > trish >________________________________________________________________ >YOU'RE PAYING TOO MUCH FOR THE INTERNET! >Juno now offers FREE Internet Access! >Try it today - there's no risk! For your FREE software, visit: >http://dl.www.juno.com/get/tagj. ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 glad things are going well for you. i found that once my water broke i was too sick and tired to be freaking out. dont worry, you will learn lots this time in preparation for the next one : ) julie Hi all Well I am now in my 8th month and both baby and I are doing well. Right now as of my last sonogram last week baby is weighing in at 3 pounds 13 oz. at 33 weeks now along. I'm getting a lot of cramping- sort of like menstrual like. Doctor assures me it's due to the baby being already head down, guess the little guy is already positioned himself for what's to come in the next month or so, I am due 2/21 and it can't get here fast enough. I eat lots of food, well compared to what I am supposed to be eating after having the gastric bypass in april of '00. I keep wondering if I will be one of those moms that freak out when I begin to go into labor. Being this is my first baby I really do not know what to expect. My ongoing problem lately seems to be to get enough liquids down in a day. Doctor says I should be getting in at least 2 liters of fluids a day. Sure bob, it's hard enough to get in 1 liter let alone 2. Anyone have any suggestions, or seem to be having this same problem, I know the baby needs all the fluids he can get but it's so hard for me to drink that much in a day. sincerely, ROXY EDD: 2/21/01 SURGERY : 4/3/00 CURRENT WEIGHT :250 Children are a reward from the Lord. Psalm 127:3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 oh, and as far as the water, i kept a mug of ice and a little water and drank as the ice melted...not counting all the ice i chewed waiting. water is very important now and during labor as well. julie Hi all Well I am now in my 8th month and both baby and I are doing well. Right now as of my last sonogram last week baby is weighing in at 3 pounds 13 oz. at 33 weeks now along. I'm getting a lot of cramping- sort of like menstrual like. Doctor assures me it's due to the baby being already head down, guess the little guy is already positioned himself for what's to come in the next month or so, I am due 2/21 and it can't get here fast enough. I eat lots of food, well compared to what I am supposed to be eating after having the gastric bypass in april of '00. I keep wondering if I will be one of those moms that freak out when I begin to go into labor. Being this is my first baby I really do not know what to expect. My ongoing problem lately seems to be to get enough liquids down in a day. Doctor says I should be getting in at least 2 liters of fluids a day. Sure bob, it's hard enough to get in 1 liter let alone 2. Anyone have any suggestions, or seem to be having this same problem, I know the baby needs all the fluids he can get but it's so hard for me to drink that much in a day. sincerely, ROXY EDD: 2/21/01 SURGERY : 4/3/00 CURRENT WEIGHT :250 Children are a reward from the Lord. Psalm 127:3 Children are a reward from the Lord. Psalm 127:3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Craig, I'm so glad you're here! There are a lot of people from Supportpath I don't have e-mail addresses for so I couldn't directly tell them about this site, wasn't sure if you were on my " list " or not...but however you found us, welcome my friend! > Why can't these docs agree on something? Yes I've said that many times myself...not only do the docs at a single institution disagree, try getting them to agree across institutions, impossible! The great secret is....you have to learn WAY MORE than you ever wanted to about all this so you yourself can make the decisions! > Now are talking about > adding Camptozar to her regimen and possibly looking at gammaknife > radiation in the near future. Your mention of the " gamma knife " (a true " gamma knife " is a 1 shot dose of radiation for brain tumor on a cobalt machine, I think you're probably refering to the same treatment I'm currently working on which is 3 fractions of conformal radiation on a linear accelerator) is very interesting - you must be talking about U Colorodo? I don't know if you heard about this or not...but there are rumors of a clinical trial involving stereotactic radioablation jointly conducted between UC and IU specifically for liver mets (sounds like in a couple months). I'm still trying to learn about this therapy - in my situation with a solitary met very close to an artery, it is almost the only " ablative " option. Had the location been different, I think I would have had a lot harder time deciding between Stereotactic Radioablation and RF Ablation. With the sizes of mets you're talking about (under 5cm), depending on the location you might want to consider RF Ablation as well. Remember...the docs you go to will only give you " options " that the CENTERS they are at specialize in...different centers " specialize " in different things...YOU'RE THE " MANAGER " ! If I were a good candidate for RF Ablation I'd probably head for Cleveland Clinic or Duke University (because I live nearer to the East Coast and I know they are good) just to see what they have to say! IU is ABSOLUTELY TERRIBLE with regard to RF Ablation - old equipment, no " specialist " in the area....I don't know what the situation is in Denver with regard to this... Craig I think the " window of opportunity " we talked about so many months ago may be here...don't wait too long in deciding what to do, remember once you make a decision these guys move SO SLOW that it will take AT LEAST 1 MORE MONTH to actually get the treatment (if its surgery, RF Ablation, or Stereotactic Radioablation that is). I'll post all the details of my own experience with SR so you'll be able to get a better idea from the patient perspective - if you just found us here be sure you check my previous posts and also the " photos " section of this board for info " to date " . Best Wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2003 Report Share Posted July 29, 2003 Hi my Neurosarc friends, I have been away on holidays up in Yellowknife NWT. Spent the whole trying to get away from the skeeters LOL. Anyway I am happy to be back. Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2003 Report Share Posted July 29, 2003 Welcome back, Ann! Hugs, Darlene ----- Original Message ----- From: Ann Balaban To: Neurosarcoidosis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2003 Report Share Posted July 29, 2003 Welcome back Ann hope you are doing ok, glad you enjoyed your time away. Now you'll have fun catching up.......lol Give thanks to the Lord always, Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Debra, That is awesome. I know one other family whose little boy is on the diet. It is a big commitment, but it works for him. If the babysitter slips up and gives him something not on the diet he has seizures. Good luck. Kim > I wanted to let everyone know that we took Tryny to Richmond, VA on February > 23 to start the Ketogenic Diet for his seizures and it's been 10 days that he > has been on the diet and he hasn't had any seizures at all. Hopefully we can > start weaning him off his medications in about a month and then we will know. > > But I am just soooooooo thrilled that he hasn't had any seizures in the last > 10 days. > > Debra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Debra, That is awesome. I know one other family whose little boy is on the diet. It is a big commitment, but it works for him. If the babysitter slips up and gives him something not on the diet he has seizures. Good luck. Kim > I wanted to let everyone know that we took Tryny to Richmond, VA on February > 23 to start the Ketogenic Diet for his seizures and it's been 10 days that he > has been on the diet and he hasn't had any seizures at all. Hopefully we can > start weaning him off his medications in about a month and then we will know. > > But I am just soooooooo thrilled that he hasn't had any seizures in the last > 10 days. > > Debra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 glad to hear it's working so well--here's to no more seizures!! maria Hi All > I wanted to let everyone know that we took Tryny to Richmond, VA on February > 23 to start the Ketogenic Diet for his seizures and it's been 10 days that he > has been on the diet and he hasn't had any seizures at all. Hopefully we can > start weaning him off his medications in about a month and then we will know. > > But I am just soooooooo thrilled that he hasn't had any seizures in the last > 10 days. > > Debra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 glad to hear it's working so well--here's to no more seizures!! maria Hi All > I wanted to let everyone know that we took Tryny to Richmond, VA on February > 23 to start the Ketogenic Diet for his seizures and it's been 10 days that he > has been on the diet and he hasn't had any seizures at all. Hopefully we can > start weaning him off his medications in about a month and then we will know. > > But I am just soooooooo thrilled that he hasn't had any seizures in the last > 10 days. > > Debra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Wow!! That is so awesome to have such remarkable results right away! I look forward to hearing how things progress. Michele W Aubrie's mom Hi All I wanted to let everyone know that we took Tryny to Richmond, VA on February 23 to start the Ketogenic Diet for his seizures and it's been 10 days that he has been on the diet and he hasn't had any seizures at all. Hopefully we can start weaning him off his medications in about a month and then we will know. But I am just soooooooo thrilled that he hasn't had any seizures in the last 10 days. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Debra, that's awesome news! Weir Mom to Kennedy 6 yr old with CHARGE, 14, 12 and wife to Graeme. New Brunswick, Canada Weir homepage: http://personal.nbnet.nb.ca/gweir CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca Hi All I wanted to let everyone know that we took Tryny to Richmond, VA on February 23 to start the Ketogenic Diet for his seizures and it's been 10 days that he has been on the diet and he hasn't had any seizures at all. Hopefully we can start weaning him off his medications in about a month and then we will know. But I am just soooooooo thrilled that he hasn't had any seizures in the last 10 days. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 Thats really good! Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 In a message dated 3/8/2004 1:37:01 PM Pacific Standard Time, momonamission@... writes: > That is so awesome to have such remarkable results right away! You know it............. Tryny's last 3 grand mal's were so bad that not only us but the hospital wasn't sure we would get him back. We are having some problems with retching though. Seem's his body can't adjust to the " high fat " content of the diet to well, so I'm taking him in to have an upper GI done tomorrow as I think he's messed up his nissen. But even if he has to have surgery to redo his nissen, surgeries is something Tryny bounces right back from (after 37 of them, I guess his body is used to it by now) but getting the seizures under control is something he is the main thing. His body can't handle many more of them. Debra Quote Link to comment Share on other sites More sharing options...
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