ana_22

im from melb!

whooooooooo hoooooo! Almost ONE year later i managed to wean off florinef and do the stim test! did it last week. NO reaction to the needle NOTHING! the only thing is now reading about it, was i meant to have laid in a quiet room for 15 mins before the test? AS this did not happen. hope it doesnt impact the results. find out in a week. though im sure i prob dont have addisons as i think they would have contacted me on the same day if i did!

yes, me too! i did this tilt training 1 year ago. one day i was feeling ok so i thought what the **** ill do 20 minutes...... about an hour after the tilt training my body felt like death (or even more so than usual!) i had to lay down, but then got this weird feeling i have to throw up or either have a BM (bowel movent). i was shaking, sweating, tachy, it was awful..... when it hadnt calmed down i went to get fluids. which kinda helped. i learnt from then to def not push it or i would pay for it.

i have had both of these tests done and recentlysaw a speacialist in the metabolic field. i like you was out of range on a few (but by only a small amount) and the speacalist said looking at the results it looks fine, but they are going to run them again under diff circumstances. the specialist said you will get different results depending on whether you were fasting, how much protien you recently ate, what time of day test is done, and a whole host of other circumstances. if you had a real obvious problem in the results the results would be way out of range, thats what they told me anyway. maybe you could repeat the test in a few months and then compare results? are you seeing a specialist that knows how to interpret the results?

dizziness is one of my worst symptoms! my dizziness is pretty constant. its kinda like feeling your head and eyes are just not right. it can can aggravated by just turning my head & is much worse when standing. if dizziness is a bad symptom for you i recommend you go to an ENT dr to rule out ear things. i actually went to an ent and they said everything was fine. later my neuro sent me to an ear hospital where they did further tests including a test called he caloric test (they put hot and cold air through your ears and measure the response) anyway this test showed i had vestibular damage, hense the dizzinesss. there are exercises you can do to improve it. i highly recommend getting this particular test as it was the only test that showed anything for me. sometimes klonoplin helps my dizziness. i guess it just relaxes my vestibular system. i think you should def investigate inner ear causes especially since you get dizzy while laying down. i rarely get the dizziness of when you get up from laying down or stand up after sitting. though when i do i find it quite scary. my body just feels so weak when it happens.

Are you able to do any or light exercise? Have you looked into the Dr Levine protocol? ive heard some people have results with that. Im so sorry about your experience. I think we all need to think of a one liner to ay to Dr's when this happens. Like I dont know what but something to let them know we are not there for a psych consult but their professional opinion in THEIR PROFESSION! It gets me so frustrated when this type of thing happens. It wasn't too long ago that MS was considered a somatic condition, until they found out what really causes it. I guess our bodies are unlucky enough to be way ahead of their time in medical diagnostics! Does that even make sense? long day......

I would give it a go. The THIRD Neuro I saw has been the right match for me. I have stuck with this one. The first one was inexperienced, quite young, and I only saw him as I could get an appt within a week. He did some bloods and reported to my dr I looked quite well. I looked terrible, gaunt and pale!!! Next neuro was very experienced and I had seen him five years prior for numb sensations. He veiwed MRI first neuro had done and concluded everything was ok. I went back to him five months later only for him to say I was fine and if this was serious I would have to wait for other symptoms to show up and that was nothing I could do untill then. I cried when he said that as I was already dizzy,nauseated, could stand for more than a few mins, barely eating and more crap. I thought what else had to happen for him to take me seriously!!!! I wish I hadn't of cried, but oh well! After that I thought I will just keep searching until I found someone willing to help. They didn't have to have the answers on the first visit, but they had to be willing to try & find the answers. The third neuro I found word of mouth. They were willing to do more tests like emg and other scans and vestibular testing. With this neuro we have figured out I have vestbular damage, periphiral neuropathy and a few other things. I'm still seeing them and I have confidence in them to really listen to me and help me. This neuro has been nothing short of wonderful! I guess what I'm saying is keep seeking answers while you still can. Be honest with the new neuro and see where it goes. If your not happy with him go somewhere else. I'm not from the USA so cannot recommend my neuro, though I have heard this place is really good for autonomic disorders. Dr barboi at Froedart in WInconstin. Not sure if this is close to you? Don't give up!!!!!

I'm doing this test soon. My endo wanted me to stop taking florinef two weeks prior to testing, then said one week would be fine. I tapered it taking it every second day and now taking every third day. I'm feeling crappy, well crappier than usual. Kind of as crappy as I felt when this all started. Called him last week but he is on holidays for two weeks. Am trying to get throught it so I can do the tests. Just wondering if anyone else doing the stim test had to stop florinef, as I have read conflicting advice in the Internet. Thanks xx

High serum copper is not an indication of Wilson disease. Since most Wilson patients have a low ceruloplasmin they actually have a lower than normal serum copper. Ceruloplasmin is the protein that binds with copper to remove it from the body. It is the unbound (to ceruloplasmin) copper that is free to roam around the body and accumulate in organs causing Wilson disease damage. An elevated serum copper is more often due to an elevation of the level of serum ceruloplasmin since it contains ~90% of the circulating copper bound to it. Elevations of ceruloplasmin can occur with inflammation, in response to estrogen therapy and in pregnancy. Note: The exception to this is when there is severe liver injury (acute liver failure) caused by Wilson disease. This causes very large amounts of copper to be released into circulation and causes markedly elevated serum copper. When this occurs, patients are very ill and usually have jaundice (yellow eyes and skin color) and very abnormal lab results with respect to liver function and blood coagulation.

Initially i thought serum copper in WD should be high but if you have Wilson's disease serum copper is LOW as all the copper has been sucked into the cells. So Sue it is worth def checking it out.

So glad to hear good news!!!! Im very happy that you are improving and of course dancing!!!!

I was just reading up on this as it can cause autonomic dysfunction, gut stuff and heat intolerance. Am thinking of asking the neuro next time I see them. Anyone been tested? Cardiovascular and sudomotor autonomic dysfunction in Wilson's disease?Limited correlation with clinical severity Dilip Sonia, Garima Shukla, a, , Sumit Singha, Vinay Goyala and Madhuri Beharia aDepartment of Neurology, All India Institute of Medical Sciences, Ansari Nagar, New Delhi 110029, India Received 16 April 2008; revised 10 June 2009; accepted 3 July 2009. Available online 8 August 2009. Abstract Background Wilson's disease, a disorder of copper metabolism, results in abnormal accumulation of copper in liver, brain, kidney and cornea giving rise to protean manifestations. Wilson's disease predominantly affects the basal ganglia and brain stem nuclei which may cause autonomic dysfunction. Disturbances of autonomic nervous system have not received attention in Wilson's disease due to its rarity. The aim of this study was to evaluate autonomic cardiovascular reflexes in patients of Wilson's disease and to look for any relationship between autonomic nervous system disturbances and clinical severity of Wilson's disease. Materials and methods Cardiovascular autonomic reflexes were evaluated clinically and electrophysiologically in 30 patients of Wilson's disease with neurological onset and compared with equal number of age and gender matched healthy controls. Results Significantly abnormal response to the Valsalva maneuver and RR interval variation was seen in patients compared to controls (p < 0.05). Latency for sympathetic skin response was also significantly (p < 0.02) prolonged in patient group. No specific correlation with clinical severity of Wilson's disease and autonomic dysfunction could be established. Conclusion Autonomic dysfunction occurs in Wilson's disease and affects parasympathetic more than the sympathetic functions.

angela- i would have the blood test for mngie just to rule it out. im surprised the dr didnt offer further testing as he 'screen' for mito bought back the low carnitine results. megan- that is excellent news! did they find what type of mito you have? & did you test low in carnitine before you started supplementing it?

When i had my tilt i was on the table but my legs were supported by a ledge thing. so even though i wasn't really exerting them i still they were stll supporting some of my weight so this could be 'exerting' them?

Im glad you have made it home! Did they say why they think this is a secondary problem? im just asking as i get the leg shakes sometimes. Also ive sent you a private message about something i wanted to share with you

yeah im worried too...ive sent him a pm, but no response. i hope his ok.

not sure what it means. have you tried changing the batteries? maybe they are getting weaker therefore the machine is finding it harder to pick up lower pressures? or if you have the booklet that came with the monitor maybe it will have info on what it means when you get an error message. just a thought. sorry i cant help you further!

just reading the thread and wanted to ask: is Supine And Standing Epinephrine And Norepinephrine Levels Test something that all potsy people should have? im kinda concerned as im very jumpy and shaky and also have nausea and difficulty staying asleep and cannot sleep during the day for the life of me!!! and also with the cymbalta.... is this good or bad for people with the hyper type of pots? thanks

oh i'm so sorry they are acting like insensitive jerks. i get pain to and i notice if im regular about taking digestive enzymes it really helps. i take them with each meal.....when i forget my stomach turns yucky again. just thinking worth a try if you are not already taking some. let us know how your next scan goes.

Last night i had something really weird happen to me. I was going to bed and turn bed my lamp off and i felt like i was blind in one eye. My right eye could 'see' in my dark room (as there was a bit of moonlight coming through my window) but my left eye was not registering. When covering my right eye all i could see with my left was darkness and just a tiny bit of moonlight. i put my lamp back on and compared the differences and both eyes were fine. i then got up and went to check out the pupils in the mirror but they were the same size. i wen back to bed and turned my lamp off and the left was still giving me a darker picture but not as bad and eventually it came good. it was really weird....i'm just wondering if this has happened to anyone else and does anyone know what kind of things cause it....is it a pupil thing? thanks x

Im glad you found someone! I haven't had any expedience with him but wanted to wish you good luck! & report back after your appt. x

I cant really help you as i'm not from the US so i have no idea how it works. i just wanted to offer you my support at what must be a difficult time for you. I know in the hospitals here (in Aus) they have someone who can give you information on planning funeral arrangements. I know when a relative of mine was in end stages of cancer they had someone visit her family at the hospital to plan the funeral (im pretty sure the hospital organised this). It was up to her whether she wanted to be involved in making the plans (she didnt really want to be involved) so her son and husband made the plans a few weeks in advance.

when i crashed with all this i had that sensitivity to smell....all smells especially food made me feel like i wanted to vomit (never did though) mine lasted for some time.....food has only just started to smell ok now....it really ***** and I hope this crappy symptom goes away for you soon!

lol of course i wont!!!!! i may be crazy enough to try the ankle bp and really freak myself out.....but not crazy enough to DO THAT!!! hehehehe

hehehe...i know thats what i thought! i want to ask my cardio about it next time i see her....but i know she will think im crazy and say what were you doing measuring your ankle BP in the first place!!!! i have an urge to measure it around my neck see hoe much blood is getting up to the brain!!! but of course it would strangle me or choke me in the processs!!!! hehehehe