AnonymousFebruary 26, 2010 at 5:48 pm
Just a short question to try whether this works (will write more if it does!) as I have problems with this site (I’m new here).
Has anyone heard of pandysautonomia or know people with this disease or know of new treatments?
Our son (25) was diagnosed with this disease 3 1/2 years ago. Initial weight loss: 28 kilos, now weighs 55 kilos, artificial nutrition, catheter, no sweat or tears, hormonal issues. Immunglobuline had no effect, a recent botox injection has very slighly improved eating. It is frustrating not to know anyone (including doctors) who have any knowledge or experience with this disease..
I would be grateful for any news, albeit sad..
February 26, 2010 at 9:20 pm
Barbara, I have never heard of this until I read about it just now. I am going to send you a private message, since you are new, look to the right hand corner of your screen and press private message
AnonymousFebruary 27, 2010 at 9:23 pm
Welcome to this site. Dysautonomia is sometimes an atypical presentation of Guillain-Barre Syndrome and I think there is one person on this site that said he/she has primarily an autonomic presentation of GBS (???). Sometimes dysautonomia is felt to be an manifestation of another autoimmune disorder. I had never heard of pandysautonomia, but did know about Familial Dysautonomia–not exactly the same, but similar in what one does to treat it. Someone famous to the town where I live has a child with this. I googled “dysautonomia” and saw quite a lot of useful information as well. I think in America dysautonomia is used more than pandysautonomia. Sometimes “autonomic neuropathy” will give other information. I also used Google (you could use internet search engine of choice) to look up pandysautonomia and one get links with this as well that look useful. Some of the links are to the National Institute of Health (NIH, which is for the USA) which has a lot of good information based. See this one [url] http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm [url]. Try also the National Dysautonomia Research Foundation (http://ndrf.org). New York University Langone Hospital has a noted Dysautonomia Research center (see [url]http://pediatrics.med.nyu.edu/dysautonomia)[/url]. Familial Dysautonomia tends to occur in Jewish populations, so there is also a research center in Israel and the NDRF says where. I do not know if your son have any options to travel, but maybe it is worth looking at and thinking about travel once to New York University in New York state to see someone with expertise to help with this extremely rare disease.
Fludrocortisone and midodrine (and ephedrine) can help with the dizziness and low blood pressure effects. I saw reference that Cymbalta and other SSRI or SNRI can help also.
WithHope for a cure of these diseases
AnonymousFebruary 27, 2010 at 9:40 pm
Another thing to look up is Postural Orthostatic Tachycardia Syndrome (POTS). This is another autonomic neuropathy or dysautonomia that sometimes occurs with GBS or separate from it. Ericainorlando that is currently posting on the site had this. She might be able to give you some good advice about ways that your son could manage some of the symptoms of a messed up autonomic nervous system.
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