Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 - > This is my first posting.... I have been reading e-mail for about a month, but until today, have been too exhausted to reply. > I am 53 years old, and have had this awful problem since before I can remember. I am told that my Daddy held my legs still while I was still in my crib, so that I could get to sleep. > Earliest memories are of " eg laches " (egg lakes). That before I was 2. The disorder causes me to have a neurological chemical imbalance in my brain that causes me to just fall. In the 15 years prior to 1995, I was on crutches every 6-9 months, as regularly as clock work. > I cannot even count the number of injuries, including a fall on my face when I finally fell asleep on my feet, and then hit the floor. Ouch. > I was completely diagnosed in 1995, and told that my disorder is progresive.... (would you believe it is in my arms now as well?) > Yes. I want to quit. No, I'm not suicidal, just exhausted. RLS has so taken over my life, that there are times when all I can do is cry. > I don't know how to fall asleep naturally. It has become a never-ending battle.....the exhaustion is overwhelming. > Talk about travel? My Dad insisted that we travel....every chance we got. I loved seeing as much of this country as I have, but what a nightmare! Less than an hour into a trip, and I was stamping the car floor! A day with my Dad usually meant 12-16 hour days. > I have learned, that the only way I can stand it, is to get out and walk...20 minutes every hour and a half, or so. See, I never quit, just learned how to adjust. > I was put on various meds as a teen....nothing ever helped. So much trouble from teachers.... teasing and ridicule from other kids....asked not to attend church because my having to move was a " disturbance " ....not going to movies.....even today. It's a waste of money. > My disorder is " Familial " ...both sides of the family. > Dispair... > I got an education, in spite of the time I spent on my feet, because I could't sit still. I have had a career, but my work record is pretty sad. Try to be a healthy person when exhaustion is your persona.... > After not being able to be evaluated in a sleep disorder center in 1995, because I never fell asleep, in fact was seldom in the bed, I became so dispondent, that I was sent to a neurologist who specializes in Neurological Sleep Disorders. > In July, 1995, this awful thingwas brought under controll! I attended " sleep school " , and learned how to sleep! Then, I slept for about 6 months.....WOW! Then I got healthy, and started losing the extra person and a third that I have carried for so long....(am down 152 lbs) > November of 1998, the disorder broke through the medication. I see my neurologist every six months, and a psychiatrist and therapist every month... > I never change my meds without directions.... > As for disability, I was told that people who are totally non-functional are denied. I am just limited, not non-functional. > Currently I take .25mg. Mirapex a 5pm., and .50mg. Mirapex at 10pm + 1 SinemtCR50/200. As of a week and a half ago, 15 mg. Remeron has been added. > It has taken a week and a half, but I actually went to sleep last night! > I cannot get pain killers, such as Vicodan, which helps both my back, and my sleep. Nor, Valium, which helps me sleep.....nothing that is habit forming or that has those side efects that Doctors don't like. > FRUSTRATION!!!!!!!!!!!!!!!!! > Yup, I lose my sense of humor, and can be impossible to be around.....in fact, don't want to be around anyone at all! > But, I have no family, no children(who wants to give this to a child!), and no husband.(never married)As of 1995, when my mother died, no roof over my head. > God help me, because I can't take much more, and here come the tears again.... > I'm told that it will get better...... > I didn't mean to end this in tears, really I didn't, but the whole thing is overwhelming, and one night's sleep in the past month, just isn't enough..... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 , This sounds absolutely intolerable! I would camp out on the doctor's doorstep until something was accomplished, if only on a temporary basis. No one can keep going with what you describe. There must be some kind of solution to the present crisis situation, and I don't think crisis is an exaggeration. ne,59, Lawrenceville, NJ > I didn't mean to end this in tears, really I didn't, but the whole thing is overwhelming, and one night's sleep in the past month, just isn't enough.....> _____________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Hi, First, welcome to the list. You'll find lots of information about cf here, as well as plenty of support. Those symptoms are certainly red flags for cystic fibrosis, and your daughter should definitely be tested. There are other disorders and diseases that can mimic these symptoms, but frequent, foul smelling stools and poor weight gain, along with salty tasting skin are good indicators. Our twins were given a heel prick test when they were a few months old in the NICU. They were born extremely premature, so they couldn't be given the standard sweat test. One thing I've always wondered was how many kids were first tested to see if they had two seperate known mutations through a blood test before going through the rigors of sweat testing, and how many did the sweat test first? It seems to me that it would be easier on the child to have a blood test done first, then, if the results there were inconclusive, to go ahead and do the sweat test. Just curious. C Mommy to Mick and Alli, 2 yo twins wcf --- abcmommy20 lorindabz@...> wrote: > I am new to this group, and not exactly sure what is > going on with my > daughter. She turned 2 yesterday, and at her > check-up today, she was > a little over 18 lbs. She has always battled with > weight. She > has frequent terrible smelling bowel movement. We > have consulted a > pediatrician and he recommended testing for CF. I > guess I am > wondering what symptoms your child had that you had > testing > recommended and what to expect if it is positive. I > hope this makes > sense. > > Thanks > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Hey all, We took to the allergist yesterday to have him tested for Shellfish. He is anaphylactic to peanuts and tree nuts, He gets really bad eczema if he has dairy or soy, so we figured that we might as well get him tested for the other major allergen lol. Well, he came out fine!!!! Woohoo!!! No allergy to Shellfish! I was so excited! Anyway, I thought I would share!!! Have a great day all!!!! ~Alyssa~Mother to (10/98) & (12/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 Hi Missy! That is great that she is not allergic to Soy! I hope that you all find out what she is allergic too! Food Allergies are horrible! Did they test her for salt or nitrates? There is salt in just about everything. That would be a horrible allergy!!! Could there have been cross contamination with something else that the company makes? I am glad that she is ok though! I hope that you are having a great new year! Alyssa Re: Hi all! Hi Alyssa! Haven't been on in a while. So busy. That's a great relief...no allergy to shellfish.We recently had Josie tested for soy. She is allergic to milk, eggs and peanuts (avoiding all nuts). She had a Hebrew national hotdog. I confirmed with the company that they are free from milk, eggs and peanuts so she is allergic to something else. The only other ingredient we questioned was soy. That came back negative. Not allergic to soy. Allergist thinks perhaps allergy to salt? Nitrites? Not much help. At least we know she's ok with soy.Always good news when it comes back negative!Well...better run!Take care!~Missy (Mom to Josie 1 yr) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Oh poor kid!! That is horrible that she can't have salt and nitrates. Just more for you to have to worry about. Is there a test to find out about the salt to see how high it is? Alyssa Re: Hi all! Hi Alyssa. The doc is assuming that it is the salt. We gave her a SMALL piece of bacon and she had 1 (yes ONE) hive on her hand where it touched. So...we're giong to go on the assumption that she is allergic to the salt/nitrites and watch her intake of that also. Poor kid. Guess she won't have a weight problem!Oh well.Take care!Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 > This is Rosie from Texas. We have appts with 2 docs in Houston. One does > lap. and the other normal. We will see how it goes and go from here. > Congratulations on the Christening! > rosie Hi Rosie! I'm Amy from TX. We are new in this process? Who do you use in Houston? That is where we will be going. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 YIPES! You're going to be a busy girl ! Take your time - glad the trip rejuvenated you! Love Lana 0 :-) Hi All! I have 1296 e-mails to go through and read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 YIPES! You're going to be a busy girl ! Take your time - glad the trip rejuvenated you! Love Lana 0 :-) Hi All! I have 1296 e-mails to go through and read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Hi -- Glad to hear you had a good time at the beach!!! It is so good, sometimes, to just get away and do something for yourself (in July I'm going to a resort down the coast and stay a couple of days -- getting a massage and facial and otherwise just pamper myself!!!) I hope you are feeling better and better each day. Love, Patti Hi All! To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Hi Cindy H., Thanks so much for your kind reply. The beach was great. I still have more surgery coming up, possible right hip, definitely both knees again, and a spinal fusion. But it was so fabulous to get away, out of the house and away from Dr's, I told him no surgery this summer. Enough for now! Thanks for your reply, how are you doing? Love, s. Re: Hi All! > , > It's great you're back--and hopefully feeling much, much better!! > You're so lucky to have gone to the beach. It sounds like a trip you sure did need. Going to surgery and that 's it, can be sooooo boring....I had 3 in twelve months and it's not looking good for staying out of OR for awhile either. > A trip can do wonders for our mood....I know it does mine! > Love to you too, > CindyH > Wisc. > ~ > From: ngsamuelson > On antibiotics still. I got fed up with hurting > all the time plus being sick on top of it. So Larry and I packed up and went to the beach, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Jo, Thanks for your kind reply! I'm still trying to catch up on e-mails, so if I missed something going on with you I'm sorry. My best wishes to you and hugs and love also! Love, S. Re: Hi All! > Hi , I am so sorry to hear you've been poorly - hope the > antibiotic have helped to clear things up for you now. I'm sending > you lots of gentle, healing hugs just in case though! I am glad > that you took the decision to go on a little break to the beach, > they say a change is as good as a rest! It sounds like you had a > lovely time out there and I can understand the feeling of wanting to > go back already!! hee-hee. > > Please take care and good luck catching up on all those emails - > yikes!! > > Love and hugs always...Jo > xx > > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Lana, Yup lots of catching up to do! Thanks for thinking of me. How are you? Love, S. Hi All! > > > > I have 1296 e-mails to go through and read. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Jill, Thanks so much for your reply. I'm doing better just have a few days of antibiotics left. The beach was wonderful, I hadn't been away in so long. I think the salt air did me good too! Lots of love! S. Hi All! > > > Hi everyone! I was pretty sick for awhile, nothing serious, sinus > and ear infections. On antibiotics still. I got fed up with hurting > all the time plus being sick on top of it. So Larry and I packed up > and went to the beach, Rheoboth Beach, for five days last week. It > was Great, I haven't been anywhere except to the OR since the summer > of 2001. I want to go back already! It will take me awhile to catch- > up, I have 1296 e-mails to go through and read. > Love to all! > S. > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Jill, Thanks so much for your reply. I'm doing better just have a few days of antibiotics left. The beach was wonderful, I hadn't been away in so long. I think the salt air did me good too! Lots of love! S. Hi All! > > > Hi everyone! I was pretty sick for awhile, nothing serious, sinus > and ear infections. On antibiotics still. I got fed up with hurting > all the time plus being sick on top of it. So Larry and I packed up > and went to the beach, Rheoboth Beach, for five days last week. It > was Great, I haven't been anywhere except to the OR since the summer > of 2001. I want to go back already! It will take me awhile to catch- > up, I have 1296 e-mails to go through and read. > Love to all! > S. > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Thanks Patti for your reply! I'm feeling better, got a few days left of antibiotics to go. Yeah isn't it great to get away, it's been such a long, long time! It was great! Respite from the pain and stress and infection. Out of this house which has become a prison. Lot's of Love, S. Hi All! > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > > > Quote Link to comment Share on other sites More sharing options...
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