Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 I know being in limbo is very hard. I remember the 15 years that I was in limbo and how hard I tried to not give in to whatever it was. Once I was able to let go of having a clean house and being on committees, I started to feel better. The supplements also help, along with prescription drugs to treat symptoms. Hang in there and know that I am thinking of you. hugs, laurie " Reply-To: Date: Thu, 20 Feb 2003 17:56:46 -0000 To: Subject: Vivian -What is your diagnosis? How did you get it? Being in this limbo is HELL! I've had SLE everyday this week and I'm at my breaking point. I took so much meds that I was afraid I'd over dose. Yeserday I was so tired from these attacks that I went to sleep and couldn't wake up. My 12 yr old came in the room and thought is was strange that I was sleeping so hard, but she just covered me up and turned off the tv and lights. My husband is away on a business trip. All my muscles are cramping and shaking and I feel very weak. I'm looking for a new PCP so I don't have a doctor I can call. At this point I wished I didn't have the mastectomy so I could die. I'm tired of the fight. I'm holding on because of my family. I fight all day every minute because I have symptoms that often. Some days are better than others. I take Nuerontin, nexium, beta blocker,B/P meds, singular,and sometime xanax and with all these meds I still have all the symptoms. Fighting today, -- In , " vivianbryant5 <schumacher53@a...> " <schumacher53@a...> wrote: > , > > My heart goes out to you. I have had so many doctors who take out > their frustration on me. I had a MS neuro yell at me because the > symptoms I was giving him did not fit MS and he had given me a MS > diagnosis a year earlier. I had another neuro ask the visiting > nurse if I was drug seeking (yeah baby IV steroids are my drug of > choice!) I had a primary care physician, yell at me and tell me > that I had made someone give me a diagnosis! I had a psychologist > tell me that I am too soft spoken and speak too matter-of-factly. I > had another psychologist say that because I did not show up as > depressed that I was faking the test, (not that I had a strong > support system and a strong belief in God). > > I am believing in the purpose behind this difficult walk. Maybe it > is so that all of us will eventually be able to bring awareness of > this illness to the light. (I think of all the people with the > limbo diagnosis over on the MS site and my heart goes out to > them...you would not believe how many of them would fit better > here...but they have yet to encounter a doctor who knows about > it...I saw four neuro's before I heard of it...and I had a > definative diagnosis). > > I believe it is to keep each other walking...some how it not as > tough when we are not alone and know that others have been told the > same thing. > > Talk on the board and share your stress...it helps so much to have > those who care and we...I do. > > Vivian > > > > > > > > > > > > I know your frustration. It isn't fun or fair. > > > > Keep your eyes and ears open for any kind of doc who is willing to > learn and > > who you can trust. I have finally found a primary care doc who > wants to > > learn after 23 years of living here. > > > > laurie > > > > From: " Nemley <tanya2727@y...> " <tanya2727@y...> > > Reply-To: > > Date: Tue, 18 Feb 2003 17:50:38 -0000 > > To: > > Subject: Been missing a while (long) > > > > > > Hi all, > > > > I haven't been here for a long while because I was feeling so > intense > > with trying to find out what is wrong with me that I could think of > > nothing else. It was who I was. I truly missed all of you, but > felt > > that I had to give you and me a break. > > > > Unfortunately I'm no further along in my search.I've seen 2 > neuro's. > > One just dwelt on the fact that I have panic disorder and wrote > this > > to my PCP, so now he's talking it too. :-( The other neuro was the > > new MDA clinc that I just went to last week. At my first visit he > > wanted all my records, sooooo I spent 3 days faxing and writing > > letters b/c I thought he was really going to help me. > > > > Well when I saw him last week, he saw what they said about me at > > columbia pres. that I don't have a mito disorder and he said " i > don't > > know what's wrong with you. " I cried all the way to my car . > > > > I have some new symptoms. I just had a eye examine and the dr. > said > > I had some visual field loss in my left eye and now some in the > > right. also My blind spot has enlarged. The eye doctor said there > are > > mitochondiral disorders that can cause this,but it happens in > > children. > > > > I'm also having a great deal of trouble with my heart rate and b/p. > > If I get tired my heart rate goes up. I've had vertigo since > > nov.2002 and the leg pains and weakness is still bad and spread to > my > > shoulders. My stomach is very bad and I live on Glucerna. > > > > I just had a crash b/c I got tired. I felt my muscles shaking and > > cramping, but I was stupid and paid the price. > > > > I've only had a few major attacks. One I had around christmas I > lost > > my ability to speak for 1 hour. > > > > I have been resting alot so I've been alittle better. I have a new > > motto for this new year, to take each second, of each minute ,of > each > > hour ,in a day with grace from God. I'm determained to make it > though > > each day. > > > > I'm without any medical help now and I don't know what I'm going to > > do . I really need to see dr. cohen and I know that not going to > > happen so I will try to live with this as best I can. > > > > I truly missed all of you, and prayed for those that were going > > through when I checked in. But since I care aboutyou all, I didn't > > want to stress you out with my stress. I've even learned to not > > stress my family with this too. I've learned to cry alone and to > > encourage myself. > > > > sorry so long, > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 , Right now the only diagnosis I have is MS and asthma and tachycardia etc. Anyway we are trying to get a diagnosis.I am in the limbo boat with you and it is really really hard. Vivian Been missing a while (long) > > > > > > Hi all, > > > > I haven't been here for a long while because I was feeling so > intense > > with trying to find out what is wrong with me that I could think of > > nothing else. It was who I was. I truly missed all of you, but > felt > > that I had to give you and me a break. > > > > Unfortunately I'm no further along in my search.I've seen 2 > neuro's. > > One just dwelt on the fact that I have panic disorder and wrote > this > > to my PCP, so now he's talking it too. :-( The other neuro was the > > new MDA clinc that I just went to last week. At my first visit he > > wanted all my records, sooooo I spent 3 days faxing and writing > > letters b/c I thought he was really going to help me. > > > > Well when I saw him last week, he saw what they said about me at > > columbia pres. that I don't have a mito disorder and he said " i > don't > > know what's wrong with you. " I cried all the way to my car . > > > > I have some new symptoms. I just had a eye examine and the dr. > said > > I had some visual field loss in my left eye and now some in the > > right. also My blind spot has enlarged. The eye doctor said there > are > > mitochondiral disorders that can cause this,but it happens in > > children. > > > > I'm also having a great deal of trouble with my heart rate and b/p. > > If I get tired my heart rate goes up. I've had vertigo since > > nov.2002 and the leg pains and weakness is still bad and spread to > my > > shoulders. My stomach is very bad and I live on Glucerna. > > > > I just had a crash b/c I got tired. I felt my muscles shaking and > > cramping, but I was stupid and paid the price. > > > > I've only had a few major attacks. One I had around christmas I > lost > > my ability to speak for 1 hour. > > > > I have been resting alot so I've been alittle better. I have a new > > motto for this new year, to take each second, of each minute ,of > each > > hour ,in a day with grace from God. I'm determained to make it > though > > each day. > > > > I'm without any medical help now and I don't know what I'm going to > > do . I really need to see dr. cohen and I know that not going to > > happen so I will try to live with this as best I can. > > > > I truly missed all of you, and prayed for those that were going > > through when I checked in. But since I care aboutyou all, I didn't > > want to stress you out with my stress. I've even learned to not > > stress my family with this too. I've learned to cry alone and to > > encourage myself. > > > > sorry so long, > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 Thanks bud, it is good to be encouraged! vivian Vivian < That is an encouragement to me to think because of this illness, I will encounter some wonderful people that I would not have if I had not become ill. < Dear Vivian, You will find new doors open to you that you could never have gone through before, all yo have to do is be willing. Blessings await you, go through the doors smiling. Still smiling, Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Quote Link to comment Share on other sites More sharing options...
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