anna

My children have poor reflex responses I am not sure why as the Dr.'s never seem bothered by it!

Thanks for posting this.

Trying to find out what is wrong with us is a nightmare not made any better when we have to fight for every thing. Take care Susan, try and keep us updated if you have the energy ok.

So sorry to see you are having to deal with so many issues, our geneticist, got to the point that he wanted to rule out Adrenoleukodystrophy (ALD) given my children's issues and family history of dementia and Parkinson's. We are still waiting for blood tests to come back!! It must be so scary with Dr.'s not being able to come up with answers, it is such a pain when we have to become medical detectives. As vertigo was your first symptom have tick borne conditions been ruled out?!

The reduction in fish oil may be something to do with it, have you tried adding it or a maybe an alternative, back in to your diet?!

"because I've actually coughed up blood before" Yep I think that needs checking, given you had no obvious infection, could it be delicate blood vessels?!

Hello Achilles, oops sorry a bit of a brain fog day the other day. What I meant to say/explain is that it depends on whether your condition is a symptom of an underline cause or whether it is the cause. Some folk seem to have POTs as a problem on it's own in others it is a symptom of a much bigger picture. Do you feel your POTS symptoms came on suddenly out of no where or did you notice over the years little odd things not feel quite right? There are a huge number of conditions that can cause POTs symptoms http://www.dinet.org/what_causes_pots.htm sometimes it is helpful to stand back from the very obvious POTs symptoms you have and see if any other symptom jump out at you, that are not obvious POTS symptoms?! Ok you say that your symptoms came out of nowhere, but before that did you notice any change in tummy habits, had you changed your diet at all before onset, could you have underline absorption issues, allergies, did you change in working environment, have new flooring and so on? To be able to get the best out of meds it really really does help if you can back track and see if anything in your pre POTs life changed as it may be a clue to your onset.

I know it is rather scary, though I do think that accumulative effect may come into play here somehow! Think of it as some people may have one mutation that effects one area of ECM but someone else may have a number of gene mutations that effect different areas of ECM. That may be why many here do not meet the criteria for EDS but show the same sort of pattern of illness. I think the holistic approach to good health is the way to go every thing we do has a knock on effect, if you make one bit of your body work happily then you put less stress on another part and such like.

I would go along with genetics in our families case! I have been interested in the function and 'miss function' of extracellular matrix (ECM) http://jcs.biologists.org/content/123/24/4195.full for a while now as quite a bit of research coming out of Europe on it's defects, I got looking into it from the connective tissue side of things but it involves so much more. For example: "Extracellular matrix (ECM) glycoproteins are widely expressed in the developing and adult nervous system. Tremendous progress has been made in defining the roles of specific ECM components in controlling the behavior of neurons and glia (Sanes 1989; Reichardt and Tomaselli 1991; Venstrom and Reichardt 1993; Milner and Campbell 2002; Nakamoto et al. 2004). Here, we will provide an overview of ECM functions in the nervous system, emphasizing recent findings that have shed light on the mechanisms by which ECM glycoproteins regulate such diverse processes as neural stem cell (NSC) behavior, neuronal migration, formation of axonal processes and their myelin sheets, and synapse formation and function." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3003458/ "An astonishing number of extracellular matrix glycoproteins are expressed in dynamic patterns in the developing and adult nervous system. Neural stem cells, neurons, and glia express receptors that mediate interactions with specific extracellular matrix molecules. Functional studies in vitro and genetic studies in mice have provided evidence that the extracellular matrix affects virtually all aspects of nervous system development and function. Here we will summarize recent findings that have shed light on the specific functions of defined extracellular matrix molecules on such diverse processes as neural stem cell differentiation, neuronal migration, the formation of axonal tracts, and the maturation and function of synapses in the peripheral and central nervous system." http://cshperspectives.cshlp.org/content/3/1/a005108.full

I think for folk who find POTS comes on suddenly you need to look at it as more of a symptom rather than 'syndrome'!

Oh no I hope all went ok!

That is exactly what I thought, and it is the point which I have a problem with, when you lump everything you are not sure about into one big syndrome then you will never get to the bottom of what is really doing on.

I am not sure if it is like in the UK, but when I have been called for jury duty, I fill in the form telling them what I have got, I give a copy of any clinic letter (not a specific Dr.'s letter) which notes my diagnosis, then I ask them if the court will be able to accommodate my needs, then I list my needs for example, need to get up and walk around after 10 minutes to prevent pre- syncope, my need to use the toilet regularly at least 2 times an hour. As yet I have not found that the court can actually meet my needs which is actually quite sad when you think about it!

It looks to me that some in the medical profession are doing their damnedest to bundle together all the conditions that as yet have no clear explanation. I am a little concerned as to why there seems to be a need link all these conditions something just seems rather odd! Sorry but I fear my scepticism maybe on full blast today!!

http://www.rsds.org/pdfsall/Systemic-Complications-of-CRPS.pdf

Gentle HUGS Rachel

Rachel I think you are at the stage that you need to be emailing any Dr.'s that might have a clue what is going on with you and seeing if they can offer any advice! Do your Dr.'s believe your Pandysautonomia is the type that is self limiting?! That might be why they do not want to go with the IVIG therapy!

Please please if you have the energy appeal! It seems that the assessment has not taken into account the postural part of POTs! Did they ask you how long you could stay upright with out being symptomatic?!

I was looking into leg compression devices the other day, not sure if it would be counter productive but it might be helpful. If you have a good relationship with your GPm maybe they could contact the local lymphedema clinic and see if they have a machine that they might be willing to let you try! I found an article that might be of interest. http://www.longmafutu.com/pdf/2/9.pdf

so did any of you have symptoms of precocious puberty? One of my twin sons has had an early puberty, he is almost 18 just had some xrays done on hip and knees and the first thing the Dr. mentioned was how my son has very very mature bones and a body of a much older man!

Hi Alex, my friend was put on the meds to reduce her prolactin levels these caused her some unwanted side effects and her endo decided as they could not find any tumours she must have been alright!!

I have a friend whom both her and her mother have raised prolactin, my friend had scans no tumour found, they both have EDS, their Dr. does not have an answer as to what is going on but they have both had this problem for years.

That is very very good news Issie well done.

"There seems to be little awareness of hyperadrenergic subsets of autonomic failure in the UK," I think the Dr.'s in the UK seem to be very one minded as to ANS dysfunction as a whole! which is getting a tad frustrating now. I have no idea what to advice re baroreflex V's Hyper Pots but if you find someone that is willing to think out of the box please let me know!

My exercise tolerance seems to have been the same all my life! I can do low impact exercise for hours, I Nordic walk without problem as long as I am on the flat if I meet even a small incline I get dizzy/spaced my chest gets tight, my left carotid artery sticks out like mad and I get a very heavy numb feeling in my arms and legs. One thing that came to mind the other day, while helping my son do an essay on the respiratory system lol, was does the fact that my lungs hyperinflate have anything to do with all this, I have been looking around the web and actually think it may have something to do with my rubbish exercise tolerance.!!