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Hi everyone,

I have probably got a hundred questions but I'll save those for later & introduce myself first. My medical problems go back for about 20 years and initially were fairly mild and intermittent but I just never felt really good. Around 1996 my health started to deteriorate, at the time I was a single mum with a 4yo daughter & I was studying full time at Uni, so of course my doc blamed it all on stress. Finally in Nov 1999 after seeing numerous doctors (a few of which had told me there was nothing wrong with me) & loads of tests an endocrinologist suggested the possibility of Mastocytosis because my tryptase levels were very high & referred me to an immunologist at a public university teaching hospital. In 2000 after lots more tests Systemic Mastocytosis was diagnosed. Most of my symptoms at that time seemed to fit with the diagnosis & my docs started concentrating on controlling it (there is no cure yet).

The next 3 years were a complete nightmare, I just kept getting worse more symptoms were developing some of which my docs thought were not related to mastocytosis. To cut a very long story short, in Feb 2003 I was diagnosed with Autoimmune Autonomic Neuropathy (AAN). Docs thought an unrelated second Primary condition; I thought a convenient box to put all my non-masto symptoms in. There were some abnormal autoantibodies found but no specific autoimmune disease could be identified. I don?t doubt that I have an autonomic disorder but I?m not convinced that this isn?t being caused by the masto.

In Aug 2003 my doc got approval for me to have intravenous immunoglobulin (IV IGg) & for the first time in years things started to improve. (I still have this every 4 weeks along with a pile of other daily meds.) I can?t work & some days are really bad, I just live a day at a time & never give up on a cure being found.

I came across this site while researching Mastocytosis & autonomic disorders & got very excited when I found references to mast cell activation disorders & mastocytosis with autonomic disorders, for the first time in a long time I don?t feel like I?m a freak of nature. I?m really looking forward to getting to know you all & hope you don?t mind an Aussie joining you.

Bronwyn.

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Hello Bronwyn , welcome to this wonderful site.......you make me quite jealouse, oh, to live in Australia , my husband and I would love to do that .........I'm 1/2 Scottish + 1/4 English + 1/4 Italian rather like someone who's been put in a blender !

We are all suffering from a form of POTS in one way or another , so your first hurdle has been over come as we understand what you and your family have been going though.

The support , understanding , care and concern I have received here is exceptional and its not just directed at me , but at my family as well , the guys on here are just wonderful .............its like coming home to a huge family who all understand what you are suffering , so hello and come on in the doors always open :unsure:

We all understand just how hard it is when you try to get a doctor to actually admit what is wrong with you , let alone stick to that diagnoses , we have all been down this road and it is an awful situation to be in , but its not just getting the diagnosis its also the little things that a doctor cannot answer or just doesn't know that makes this site so good.

If one of us haven't got it , hasn't had it , or is keeping it under control ( whatever it is ) then you can bet we can find an answer somewhere for you on the net .

I look forward to speaking with you again at sometime soon. Bye for now as I'd better get back to my glue gun or I'll stick the table to the table cloth ..............look after yourself and keep your chin up girl , you've found the greatest set of friends a girl could ever wish for ....................Ami XXXXX

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Hi Ami,

Thank you for the warm welcome, I spent a year (1991) in the UK on a working holiday (more holiday than working) I absolutely fell in love with it. I went back once in 1993 & really hope to get there again sometime. I couldn't have survived this without my family but as supportive as they are they really don't understand what it feels like to be chronically ill.

Great name by the way, my daughter's name is Amy! :unsure:

Thanks

Bronwyn

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Welcome Bronwyn!

I think you will find several members here who suffer from POTS and mastocytosis. I've also had some weird allergy stuff (skin erruptions, etc) and have wondered about mastocytosis. I look forward to seeing youpost and learning from you.

Julie

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Hi Bronwyn,

Welcome!! I'm glad you've found us, even under such circumstances. I hope you are able to find some answers to your questions- looking around the DINET site and also searching the forum might be very helpful.

We have all sorts of people here, with all sorts of types of autonomic dysfunction.... involving all different types of experiences with illness, doctors, friends family and work, and also in different stages of diagnosis. Chances are, if you've got a question, if an answer is out there, someone here can provide direction or at the least, SUPPORT! (although the support can be even more helpful!!!!)

I came here almost 2 years ago, and it's hard to go a whole day without checking in on everybody! ;)

Take care of yourself, and welcome to the team! :)

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Guest dionna

welcome to the site... this is a great place to ask questions and not feel like a "freak of nature". lol. i am sure you will make plenty of friends on here and i wish you the best of luck with your treatments and all of your appointments in the future!!!

dionna :)

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Thanks everyone for the welcome. I've been reading heaps of old posts & already learning heaps.

Rhonda I'm happy to discuss the IVIg with you, I've sent you a message but I'm still learning how to navigate around here so if you don't get it then I must have stuffed it up! :)

Sorry in advance if I ask dumb questions or things that have been explained elsewhere,

Thanks

Bronwyn

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Hi Bronwyn,

I have POTS and have awful trouble with allergic rhinitis and lesser trouble with asthma. I discovered that my POTS virtually disappears when I take prednisolone to suppress my rhinitis. I am starting to wonder what the link between POTS and allergy / histamine release is. I wonder if a mast cell stabiliser would help me or if I have some sort of weird autoimmune condition. My POTS started following a viral infection which if I've understood correctly may tie in with an autoimmune problem?

Anyway, welcome to this wonderful forum. I haven't been posting on here for very long but am already adicted to the site. I have asked several questions and shared my current problems and have had a fantastic response from everyone - either information or support or both. You're certainly not alone any more.

Flop

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just wanted to add my welcome & hello. sorry you have reason to be here but glad you found the forum.

i'm actually one of the few others on the site who has tried IVIG and while i'm no longer on it if you do a search i wrote quite a bit about my experiences.

:) melissa

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Hi Bronwyn,

I wanted to add my "Hello" wave too. I read the forum a lot - and answer posts sometimes.... B) LOL!

My very best friend through Jr Hi, Sr Hi and College was born in Adelaide! In fact I think her family still lives there... I met her cousin once! She was a pretty typical US teenager except she ate marmite on her toast! LOL

Nice to meet you and hear a bit of your story.

~Melanie

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I just wanted to say Hello and Welcome! I am gald you found us all. I think you will find this is a great place to find support, and friendships with others that are just like you and knwo whats it like to live with the illnes.

B) Welcome ;)

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dayna -

the only way to know/test for certain that it's autoimmune is if one has certain antibodies (that can be tested for). testing for these has been dicussed at least a few time so should be able to be found in a search. let me know if you have trouble finding the posts.

the current understanding though is that there are likely antibodies that others may have that haven't yet been identified such that one could have the above testing be negative and theoretically still have an autoimmune process going on. in these cases doctors may give the diagnosis - though not with perfect certainty - based on response to certain treatment(s), the course of illness, other autoimmune issues being present (that can be verified), etc.

docs thought there was a good chance i had an autoimmune process going on which is why we tried the IVIG. the fact that i had no response to the treatment makes them much less likely to now think that this is the case.

hope this helps,

B) melissa

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Hi Bronwyn,

I wanted to add my "Hello" wave too. I read the forum a lot - and answer posts sometimes.... :blink: LOL!

My very best friend through Jr Hi, Sr Hi and College was born in Adelaide! In fact I think her family still lives there... I met her cousin once! She was a pretty typical US teenager except she ate marmite on her toast! LOL

Nice to meet you and hear a bit of your story.

~Melanie

This is just to say that there's nothing wrong with Marmite. :P Yum!!!!

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Well, Luckycharm... I don't know..... LOL! It is defineately an aquired taste. and I don't know too many teenagers in the US who eat it on toast for breakfast! Hee hee.. :blink:

Do you eat it regularly? It's pretty hard to find here! Let's see, what else it typical Australian...

Oh, Bronwyn... how is the drought? Still really bad? Fires? Had any rain? I have a freind on another forum who was asking us to pray for Australia and told me about all the fires etc... haven't heard if there has been any relief!

Dayna, and all... I've been very interested in the autoimmune possibility too. Early on in trying to figure all this out I had an ANA test done which came back very high and abnormal. I was sent to a rheumatologist that told me I did NOT have Lupus and therefore concluded it was a false positive. This doesn't really make sense to me... just because it's not Lupus doesn't mean an abnormal ANA isn't pointing to some other autoimmune issue. I had the test for the antibodies that Sunfish mentioned... they did it for me at Vanderbilt and I don't have that one... but like she said... there may be many others they just have not identifed yet.

I've wondered about trying a short trial of prednisone... but none of the dysautonimia doctors I've met with seem to take much interest in my thoughts about possible autoimmune...??? Maybe because they just don't know enought about it yet.

~Melanie

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Prednisolone - it definitly made my POTS symptoms improve dramatically (don't know if it helps POTS or if my allergies trigger POTS). The problem is that no doctor will support you taking it for POTS and it has horrible long term side-effects. Thinning of the skin, thinning of the bones, immunosuppression, adrenal suppression, weight gain, acne....I could go on.

I took it two years running for 8 and 6 months respectively. Coming off pred was really hard as the POTS flared everytime I dropped the dose. Even by taking eg 7,7,7,7,7,7,7,6,7,6,7,6,7,6,6,6,6... I felt awful for 4 days a week. I am vowing to avoid the stuff this summer and just try to live with the allergies and the effect they have on my POTS.

Flop

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Hi everyone,

Thanks for the welcome, I'm already getting addicted to this place, reading posts nearly every day. I've been going over heaps of old posts & answering lots of my questions.

For those who were commenting on the Marmite, it's actually Vegemite we Aussies can't live without & there is no better breakfast than Vegemite on toast. :blink: Lukkychrm42 if you like Marmite you will love Vegemite.

As for the drought here it is really bad, they're saying now that it's the worst drought we have ever had. Adelaide has just had the hottest, driest summer on record.

My autoimmune dx. was first suspected a couple of years before they concluded that it had to be autoimmune. I had a weak positive ANA, & then tested positive to anti-endomysial which causes Celiac Disease, my bowel biopsy looked a bit like celiac but the Gastroenterologist wasn't convinced. I went on the gluten free diet for 6 months & actually got worse, they repeated the endoscopy & did more bowel biopsies which confirmed the bowels had gotten worse & that I also had duedenitis. All the docs then agreed it wasn't Celiac disease. By then my immunologist was heavily involved in a research project that was attempting to identify what they suspected was another auto-antibody involved in Sjrogens, Lupus & a few other Autoimmune diseases. He decided to use some of my blood in their experiments with mice - my blood killed the mice :P

I felt terrible, my doc was excited. He arranged for me to be included in a clinical trial using high dose IVIG, I had the same dose I'm getting now but every day for 5 days, by the third day the diarhea & stomach cramping, & the bladder problems were gone & my blood pressure was a bit more stable. Lots of other stuff continued to improve over the next few weeks & for a while I felt pretty good. I'm not sure if this Autoantibody has been given a proper name but it inhibits M3 muscarinic receptor (M3R)-mediated neurotransmission and causes bladder and bowel dysfunction. Most people with autoimmune diseases tend to have multiple auto-antibodies & my docs are sure that there are other unidentified auto-antibodies. What they don't know yet is whether or not the Mastocytosis is related. (I think it is.)

I'm on & off Prednisolone a lot & the side effects are awful, my postural hypotension & to some extent the postural tachy are better on Prednisolone but I think it may be because I get really bad fluid retention on it & it also puts my BP up. Can't say I would recommend it, I don't have a choice & need it for joint, bone & muscle pain.

Hope this helps someone,

Cheers

Bronwyn

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Very interesting info Bronwyn! See you have some things you can teach us too! I know quite a few here have tried IVIG... haven't pursued that myself though.

And yes! It was Vegemite my best friend ate... not marmite.... but my poor memory wouldn't let me pull that word up... it's been a while since High School LOL!

~Melanie

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