Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Hi Joanne, You sure have a lot on your plate … hope you can find a way to cope! With love -----Oorspronkelijk bericht----- Van: JJCathcart [mailto:JJCATHCART@...] Verzonden: woensdag 6 augustus 2003 22:10 Aan: PBCSpiritualSide ; PBC_Digest-owner ; Onderwerp: [ ] Dystonia http://www.dystonia-support.org/In%20our%20own%20words%20 A bit about my other illness. Joanne(index).htm " There is a destiny that makes us brothers None goes his way alone, All that we send into the lives of others Comes back into our own " Dystonia makes no distinctions - age, religion, nationality, economic status, gender, play absolutely no part in who can be afflicted with this insidious disease. Living with dystonia, no matter which type one has, presents major challenges and adjustments for each of us. Dystonia leaves no facet of one's life untouched. People with dystonia are faced with the daily challenge of living in a body that no longer responds to our commands. However, all of us share a common bond - how our lives were changed dramatically when we were diagnosed. We believe the biggest factor, in helping all of us cope, is knowledge and support! Knowledge is the key in getting proper treatment of dystonia. This allows one to take an active role in our treatment. Support is knowing there are others with this rare disease, willing to share, understand, encourage and empathize; and not be judgmental, but positive and supportive; lending that shoulder to lean on in the hard times that we all experience. Being there to cheer our victories, and successes, no matter how small. The following pages contain excerpts from various postings and emails from people from all over the world. Who better to express the reality of dystonia than those of us who deal with it daily! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 What are dystonia-like symptoms? Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 From what I can best understand, the symptoms are: restless leg syndrome, involuntary muscle spasms/twitches, and tremors. Someone please correct me if I am wrong. Thanks, bb [ ] Dystonia > > What are dystonia-like symptoms? > Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Itching, without rash, was my first symptom. It slowly improved as my liver healed. As for swallowing -- I began having trouble swallowing soon after diagnosis. At the time, I blamed it on weight gain from Prednisone; that was only my guess, due to coincidence of timing and guilt over gaining weight. The swallowing difficulty largely went away in time -- perhaps from Prednisone reduction, more likely from my liver condition improving. Harper In a message dated 3/19/08 10:48:29 AM, JJCATHCART@... writes: > As for itching I didn't itch until the last 3 years . But, others itcan > start in the beginning...As for itching I didn't itch until the last 3 years .... > How about the rest of you folks? > > ************** Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 With me I also have trouble swallowing. My docs gave me reglan to take before each meal and at bed time. I suffer from Sjogrens so my mouth is extremely dry. I use Oasis mouth rinse but it doesn't always help. As for nausea. I suffer from it now more than ever. I take phenergan everyday. I have found that eating very small meals (yogurt and a banana) help some. My itching was when I was first diagnosed. I thought I would scratch myself raw. They put me on Actigal I believe it was called and it helped. I hope this helps you. the WV hillbilly LOVE IS IN ALL THINGS AND IN ALL THINGS IS LOVE [ ] Dystonia Autoimmune Liver Disease Support Group Listbot LiverSupport- LI too had dystonia.mine was severe paradoxyl.legs and arms. I was on muscle relaxers (generic Flexeril) it helped but didn't stop it.but by then mine was very bad. After transplant it has gone! I am very happy about that. BUT, I do have throat problems.my ENT seems to think is from the ventilator after my transplant. I was intubated a long time as I had pneumonia and another lung disease. The only thing I can say about swallowing.is to take small mouthfulls. If you start to cramp up in the throat just stop for a minute until the esophagus cramp stops.that is what I do. You also may want to keep your throat lubricated.I have Tom's of Maine mouthwash for dry mouth and also a throat spray....... .. Nausea.I think we are all different in many of the symptoms.especially for those with PBC. Some people never have any nausea.other like myself.it was up and down. It was one of my first symptoms...it went away for years only to come back .and did this off and on throughout. As for itching I didn't itch until the last 3 years . But, others itcan start in the beginning... . How about the rest of you folks? Blessings, Joanne Quote Link to comment Share on other sites More sharing options...
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