This topic contains 8 replies, has 1 voice, and was last updated by Georgia Martin 3 years, 5 months ago.
November 26, 2014 at 2:38 pm #1345
I have been reading posts on this page for sometime and am constantly amazed by strength and courage you all show each and every day. I am a 36 year old female with 2 small children and a wonderful husband. Over the past 8 months I have developed chronic constipation, gastroparesis, mild OH and now urinary frequency. I am wondering if there is a neurologist in Melbourne , Sustralia that specialises in MSA as it seems a few of you had problems with various doctors recognising the disease.
Thanks for taking the time to read,
GeorgiaNovember 26, 2014 at 4:20 pm #1346
Whereabouts are you in Australia? There are plenty of Neurologists that are up to date with MSA but it depends where you live. You might find it of interest to go to the Australian MSA Facebook page at https://www.facebook.com/#!/groups/MSAOZNZ/ .
If you are in Victoria, the Bethlehem Hospital is a good place to contact – also the Parkinson Victoria group http://www.parkinsonsvic.gov.au is involved with MSA & other related illnesses and maybe able to give you pamphlets on the disorder or may know of support meetings where the patients attend with MSA.
JCNovember 26, 2014 at 5:11 pm #1347
Thanks for your reply John. I’m in Macedon just out of Melbourne. I appreciate the links to the Facebook page etc and will definitely check them out.
Thanks againNovember 26, 2014 at 5:56 pm #1348
Also wondering if there are many patients on here in their 30’s?Feeling very young and alone. I should add that I haven’t been formally diagnosed yet but seem to identify with most of the symptoms.
Thanks again.January 5, 2015 at 7:50 pm #1349
I should have replied to you earlier and sorry that it was delayed for long. My sister is only 40 and she has been tentatively diagnosed with MSA. We are still unsure whether it’s indeed MSA or a pure autonomic nervous disorder as she has very minor movement problems and her dizziness and urination problems have been going on for many years. She fainted a few times recently and the blood pressure remains very bad. We are going to see Dr David Williams in Melbourne. Hope that he’s good.January 19, 2015 at 7:57 pm #1351
Hi Karen, thanks so much for your reply. I also do not have the movement issues yet but I have only had symptoms for roughly 9 months. It sounds as though you are being very supportive of your sister which I’m sure is a huge help for her. Let me know how you go with David Williams-I hear he is the guy to go to about MSA and I am contemplating asking for a referral to him instead of another neurologist I am seeing in a few months.
GeorgiaJanuary 19, 2015 at 8:12 pm #1350
Also Karen, has your sister had any luck with medication for frequent urination?
GeorgiaAugust 12, 2015 at 12:11 pm #1352
Did you ever receive a diagnosis? I am 40 with very similar symptoms. My only diagnoses are neurocardiogenic syncope, Orthostatic Hypotension, and idiopathic autonomic neuropathy. My symptoms started at 38. I recently started having symptoms of a movement disorder. My doctors seem to think that I am much too young for MSA but don’t know what is causing all of my symptoms.August 31, 2015 at 12:22 pm #1353
Hi Brooke. Are you taking midodrine for your orthostatic hypotension? It can cause muscle twitching which looks remarkably like a movement disorder in a rare number of patients. It happened to me, and resolved soon after I stopped taking it.
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