Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 In a message dated 3/30/2004 9:03:28 PM Eastern Standard Time, lisa100@... writes: My name is and I live in Oz. Tara is sitting here typing for me. I have just been diagnosed and need help with everything. Especially want to speak to anyone with major GI issues and/or TPN. Tara says Hi. Will be back with the group soon. HI , I have severe GI dysmotility and have been on TPN for 10 yrs. I also have a friend who lives in Brisbane with similar issues. Feel free to ask any questions you have. Welcome to the group! Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Hi all, My name is and I live in Oz. Tara is sitting here typing for me. I have just been diagnosed and need help with everything. Especially want to speak to anyone with major GI issues and/or TPN. Tara says Hi. Will be back with the group soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Hi , Welcome to Mitoldies. This is a great group and they will definitely address your questions so when you are ready.. ask away. I have to say - Hi Tara. Thanks for bringing to the group. I hope things are better for you than they were the last time I read a message from you. Alice Hi all, My name is and I live in Oz. Tara is sitting here typing for me. I have just been diagnosed and need help with everything. Especially want to speak to anyone with major GI issues and/or TPN. Tara says Hi. Will be back with the group soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Welcome to the group. You have a great help already in knowing Tara. I hope you can find some answers and friendship here. Please say hi to Tara for me. laurie > > Reply-To: > Date: Wed, 31 Mar 2004 01:53:47 -0000 > To: > Subject: I'm new - help > > Hi all, > My name is and I live in Oz. Tara is sitting here typing for > me. I have just been diagnosed and need help with everything. > Especially want to speak to anyone with major GI issues and/or TPN. > Tara says Hi. Will be back with the group soon. > > > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 , Welcome to the group! I'm Adrienne and from Virginia in the US. I'm not yet diagnosed but am waiting on test results including a muscle biopsy which I hope to have the results in the next 2 wks. I've had symptoms all my life but they were fairly mild up until the past 5 yrs. I'm 24 now. As a child my main probs were with developmental delays, swallowing probs and hypotonia both which werent too severe but I still had to go through speech and occupational therapy for them. I also had some probs with exercize intolerance, migraines and a few other things that came up with infections (like constipation, possible petite mal seizures, high fevers, behavior changes, etc) as a child. They suggested that I had CFS once. Then in my mid-teens I began to have alot of GI probs. They began first just with nausea, bloating and reflux. I would also have probs back and forth with constipation and diahrrea- they just dx'd me with GERD and IBS. I began to have more probs with fatigue and migraines and more muscle pain and weakness. I also had near fainting spells which they connected to hypoglycemia. They then diagnosed me with fibromyalgia at age 18. Around age 19 my symptoms started getting worse with multiple types of seizures, stroke like episodes, neuropathy, endocrine probs, etc). They began to look into autoimmune disorders and questioned lupus for awhile- they then decided I had mixed connective tissue disease (they still believe I have this). But then 2 yrs ago they found out about all my GI dysmotility disorders along with several other things and decided to see if I had dysautonomia through a tilt table test. Turns out I did- so this was were they finally started to look into mito (it had been suggested a few times but not taken real seriously). Anyways.....as they found more and more systems affected (lungs, bladder, but all not too severe luckily) I still havent been able to find a mito knowledable dr close too me that wants to see me on a reg basis. Im not giving up though- I think that maybe once I get more a clear answer it might be easier, I just hope I get one. Alot of the drs (Dr. Shields, Gropman, Shoffner, etc) have suggested me having MNGIE which is a major GI one- but I feel I fit MELAS or MIDS more. Anyways,sorry this is so long, just thought I'd share my long story (its so much longer though!) so you know you arent alone- hate you are dealing with this too though! I havent been too active in this group lately because I've been in a bad crash, but hoping to start posting more now. Hope to get to know you more- this is a great group of people, dont know what id do w/o them! Tell us more bout yourself now. Again, welcome! Oh, and say hi to Tara too! Take care, Adrienne PS- Im not on TPN but there are several that are- Malisa is the one to talk to probably. I'm probably going to eventually end up on something- either feeding tube or TPN or both though. Quote Link to comment Share on other sites More sharing options...
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