Home Forums Surfcoastwombat’s MSA Forum Email register and web based chat room

This topic contains 10 replies, has 1 voice, and was last updated by  Debbie Templeton 3 years, 9 months ago.

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  • #1318

    Debbie Templeton

    Good afternoon,

    I have posted before, my husband, Ian, 43 has been diagnosed with MSA! I am in the process of starting a Email register, I am hoping to start a web based chat room as well, this is being a bit more of a challenge, but am sure we will sort it out soon!

    There are more and more people unfortunately being diagnosed with this dreadful disease, there is also becoming more support out there which is great, technology certainly helps with this…..

    As many people do not like facebook we are trying to get more options for everyone out there. So please send me your details and email, phone number and what ever other info you like…. My email is Debbie.b102@hotmail.com
    There are some truly amazing people out there and we could all benefit from the info that is popping up!

    Cheers Debbie

    #1321

    Karen

    Hi Debbie
    Thanks for the posts by you and all the others. We are all the same, suffering from seeing our loved one suffering from MSA. My sister is only 40 and she has just been diagnosed with MSA after many years of weird appearance. She has frequent urination, hypotension and sleep apenea. I am very very sad and really want to know what can be the best way of helping her. She lives in Adelaide but I live close to Melbourne. Do you know any places or doctors that we should go for consultation? Her blood pressure remains very low. People have also talked about the stemcell treatment. What’s your idea about all these things? We are just starting the journey and I will be alongside my sister traveling on it and really appreciate you and many others to be around us. Let’s share the experience and all win the battles.

    cheers
    Karen

    #1323

    Debbie Templeton

    Hi Karen,

    Truly sorry to hear about your sister, We live in central queensland, so I have no idea on doctors down your way. Sorry. There Is a facebook page MSA in Australia and New Zealand there are a lot of members here in Australia. It sounds as though your sister has MSA -C. Ian has MSA -P either way its bloody horrific…. Ian is on the one minute cure and is doing better, he is also taking Himalayn rock salt daily. we are totally organic and trying very hard to follow Terry Wahl reversing MS theory:) Please feel free to contact me at any time. We will be in Melbourne for 3 days from the 3rd to 6th November if you would like to chat… Cheers Debbie

    #1325

    Debbie Templeton

    Karen,

    There has just been a conference in the US that I watched last night via the web cam, face book, they spoke of stem cell replacement, but very early in trials and may be years away..

    #1328

    Karen Guo

    Dear Debbie
    Thanks for the reply. I also understand that Stem cell is an immature treatment. I may not be able to make a meeting from the 3rd to 6th Nov because i work and live in Ballarat but if you give me your mobile, i can phone for a chat.

    cheers
    Karen

    #1324

    Karen Guo

    Dear Debbie
    Can you please let me know the one minute cure and how Ian is doing it? I also want my sister to try Terry Wahl reversing MS theory. Should we buy a book or learn it from a therapist?

    cheers
    Karen

    #1319

    kathy fahey

    hi deb , i spoke to you some time ago ,im sorry to hear ian is getting worse he is so young, but you are a blessing doing what you are in getting an online chat ect , and more and more people are being diagnosed with this horror disease, that brings me to a question , my husband has msa-c and has the lot, balance, speech, swallow,choughing,and a few other things , and also consistent hiccups which sound like he is dry reaching its so annoying and he feels embarrased in public ,does anyone else suffer with this problem i would love to hear from you , all the best to all
    kathy

    #1326

    Michael Chahine

    Hi I Can Be Contacted on 0419239263.
    I have recently diagnosed with MSA-c
    You can E mail your Contact Number then
    I Can contact you guys.
    I have unlimited call facility
    Kind regards
    Michael

    #1320

    Carole

    Hi Kathy,
    You all seem to live in Australia, but I live in Canada. My husband has been having several issues for the last 4+ years (balance, speech, coughing, hiccups). He doesn’t have a specific diagnosis yet, but his neurologist suspects some type of spinocerebellar ataxia. I would very much appreciate having a chance to discuss with you. Can you email me? Carole from Canada

    #1327

    Karen

    Hi Michael
    How are you? I think you are the person who called me the other day about my sister. Hope that you are improving.
    My sister is doing ok. She is trying the Chinese medical treatments which haven’t shown much help, and I’ll consult a nature therapist soon about the treatments here. She is positive that she will get better as she’s young and quite strong. She walks well although clumsy and unbalance but can manage quite a bit without assistance. The only thing that troubles us is the breathing difficulty. Recently, she started complaining about the increasing dizziness frequency.

    #1322

    Georgia Martin

    Hi Karen,
    I am 36 and relate to your sister’s symptoms. I am not diagnosed but suspect MSA. I was wondering if your sister takes anything for frequent urination as this symptom really bothers me at the moment? Also, what were her first symptoms and at what age? I fear that being so young no one will take me seriously and I have already been seeing doctors about my symptoms for a year now.
    Hoping you are coping and wishing you all the best in the coming year. What a great sister you are!

    Thanks,
    Georgia

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