anna

Nowwhat Do you mean Paget's disease; Paget’s disease of the breast is an eczema-like change in the skin of the nipple, and 9 out of 10 women who have it (90%) have an underlying breast cancer. The underlying breast cancer may be an invasive breast cancer or ductal carcinoma in situ (DCIS). In DCIS, the cancer cells are completely contained within the milk ducts. Paget’s disease affects about 1–2 out of every 100 women with breast cancer (1–2%). It's most common in women in their 50s, but can occur at a younger or older age. It can affect men, but this is extremely rare. Or is it another form?

This does seem to be a big problem for quite a few here as well, I really wish Dr.'s would look at the whole picture sometimes!!

I am glad you are onto something here and hope your son soon finds a regime that helps him reduce his issues. The mast cell angle has been of interest for me for a while as my children have some very odd allergy type symptoms, the main being a swelling throat and breathlessness that comes out of the blue, but is reduced when given high does antihistamines. The big problem is that my children get angiodema and GI ulcers when they have NSAIDS of any sort.

I am not in the US so my understanding of your legal system is zero, but on grounds of common sense and disability discrimination rules in the UK I would say you are being bullied, and that is not right.

Thank you all, it does seem odd how actually out of control our HR and BP can be!! I will have to bring it up at my children's next ANS Dr.'s visit in June. It is sadly reassuring to see others have the same issues!

Do many folk here have days were you have bradycardia even when moving about?! My son's new symptoms are more breathlessness, very heavy arms and legs, pain in his head, not a headache as such! We checked his BP which was between 98/68 to 117/73 but his Heart rate stayed around low 50's and that is when his head pain was worse. Any ideas?!

Jen, I get odd noises in that seem to originate from my head when I move my head in certain positions, I also get pulsating tintinus (sp?) as a constant background sound. As for the twitching and jerking I have Myoclonus Dystonia (linked to my families EDS presentation) which is always more noticeable when my ANS stuff is playing up more. Now for the loose of hand function you may find that in links in with your leg issues! have you had issues with your neck lately? Anyway as these symptoms are new for you you really need to see a Dr. no point trying to guess at it too long as you will probably work yourself up no end with worry, as most of us have no doubt done before.

Good post thank you.

Is this not part of Dr. Driscoll's theory?! Go to pretty ill.com and you will find all the latest info there.

I am sure the moon cycle has a lot to answer for, one of my boys had a major night terror Thursday night, he used to get night terrors and sleepwalk when younger but had grown out of them so we thought! My children and I also seem to get more migraines the week before a full moon!

Do you have EDS?!

Thanks Corina, I have heard he is good too!

So true many quacks get on the band wagon, when they think they can benefit finically. I did find the above study of interest though as ASD runs alone side all the folk in my family that have EDS, sure something must link all this together!

An other thing is depending where you are in the UK there are a few Dr.'s with an interest in ANS dysfunction, that you may want to try as well. This is a good read; http://www.stars.org.uk/files/file/pots-downloadable-pdf/newcastle-perspective.pdf You could try finding these guys as well; http://bjcardio.co.uk/2010/02/postural-orthostatic-tachycardia-syndrome-pots-a-diagnostic-dilemma/ Just click on 'view details' under Authors. Not sure if this may be of use:! http://pmj.bmj.com/content/83/981/478.abstract There is a Dr. in Bristol that has been doing some work in the field I will try find his details if needed ok.

There is a good study; http://www.ncbi.nlm.nih.gov/pubmed/16198209 Reduced cardiac parasympathetic activity in children with autism. Ming X, Julu PO, Brimacombe M, Connor S, Daniels ML. Source Department of Neuroscience, New Jersey Medical School, UMDNJ, Newark, 90 Bergen Street, DOC 8100, NJ 07103, USA. mingxu@umdnj.edu Abstract Many of the clinical symptoms of autism suggest autonomic dysfunction. The aim of this study was to measure baseline cardiovascular autonomic function in children with autism using the NeuroScope, a device that can measure this brainstem function in real-time. Resting cardiac vagal tone (CVT), cardiac sensitivity to baroreflex (CSB), mean arterial blood pressure (MAP), diastolic blood pressure (DBP), systolic blood pressure (SBP) and heart rate (HR) were recorded in three different groups of children. The symptomatic group (n = 15) consisted of those with autism who exhibited symptoms or signs of autonomic dysfunction. The asymptomatic group (n = 13) consisted of children with autism but without symptoms or signs of autonomic dysfunction and the healthy children were in the control group (n = 117). The CVT and CSB were significantly lower in association with a significant elevation in HR, MAP and DBP in all children with autism compared with the healthy controls. Further more, the levels of CVT and CSB were lower in the symptomatic than in the asymptomatic group. The levels of CVT and CSB were not related to age in all the three groups. These results suggest that there is low baseline cardiac parasympathetic activity with evidence of elevated sympathetic tone in children with autism whether or not they have symptoms or signs of autonomic abnormalities.

Good post Issie

I think this med must be very difficult to get hold of in the USA! My son is traveling from the UK to New York at end of June and his travel company need him to get a Dr's letter explaining he has a prescription for Domperidone or he will have it at confiscated on entry at boarder control.

I get patches of odd ice cold feelings mostly on my face but can be anywhere from head to toe, my neuro told me it was most likely due to my neck/spine being slightly out causing some form of nerve entrapment. I sometimes fell like ice cold water is trickling down my legs it is such an odd feeling.

Hi Linda, I am in the UK I have found a few labs here that tests for low DAO! But I am sure there must be more available in the States I will ask around ok. I just found this on one UK lab sight and thought it might be of interest; Blood test and further diagnostics The histamine intolerance test measures the activity of the DAO contained in the blood, since the DAO circulates through the body in the blood. The blood is mixed with a substance similar to histamine and the degradation of this substance is measured. The larger the quantity of DAO in the blood, the larger is the portion of the substance that is degraded. In the next step - as a basis for therapy - two possible causes of histamine intolerance can be determined by means of further diagnostics. Copper is a central component in the DAO. If not enough copper is present, DAO cannot be produced in sufficient quantities. Vitamin B6 is a co-factor that means that the DAO cannot convert any histamine without this factor. If a reduced DAO activity is found, the determination of vitamin B6 and copper in the serum can be made in a second step. That was from LSIA lab registered in Canada. Linda just found something I have PMed it to you ok!

Well a big HELLO and WELCOME to all our newbes, KatT, did you damage your C spine in the car accident, oh and yes are you at all hypermobile?!

Oh thanks for posting those articles the second one is just what I have been looking for brill, this might help my GP understand that my son's sleep issues.

Hi Linda, I think the test for this seems to be checking urine and or serum for histamine levels, or testing for low levels of Diamine oxidase. (Diamine oxidase (DAO) is the main enzyme for the metabolism of ingested histamine). Not sure who is doing these tests, but it could be wise to try listing all the foods that trigger a reaction then see if they link to the histamine containing list of foods.

Linda I can not remember if we discussed Histamine intolerance! http://www.ajcn.org/content/85/5/1185.full I too get some of the symptoms you mention when eating some foods I am looking into the whole histamine issue now as it fits better with my families odd reactions than the MCAD does. The herpes virus, it does seem like most folk have this in their system http://pathmicro.med.sc.edu/virol/herpes.htm seems that some Dr.'s say this is the cause of ME/CFS others do not agree, I think it could be linked, but more that the virus mutates in some people, thus the problem may arise, anyway not sure how significant having the virus is.

I think it most be that he was having a bad day, maybe some of our symptoms are rubbing off onto him brain fog possibly!!!! ha ha

I would run, well crawl in my case ha ha away from this contract of care!! As has been mention may be you could use some of his cited material to get some tests done of your own.