hayley

Thankyou for replying. I am working with a physio but i'm being expected to walk again, when my body hasn't adjusted to standing up yet. I have been told i probably won't walk again and my best hope is standing to transfer. It's because my knees aren't stable enough to hold me up. I'm not giving up though. Maybe if i keep trying to stand for a few seconds several times a day, then my body may adjust.

Hi, I was on this forum many years ago. Since then my pots has been keep sort of at bay. However i had a virus in may and haven't been able to walk since. My walking wasn't brilliant before. I'm trying to stand up again but my p.o.t.s is really not happy. I also have eds, which doesn't help the situation as i have to wear leg braces to help me walk. Can anyone advise me on how to get my body to adjust to being upright please. x

sorry

well today im not convinced its in my head.i havent been well for the last couple of days.i feel terrible, can hardly walk and i have the numbness back on my leg and cheek.Im soo exhausted ..these are the same symptoms that put me in hospital in september .thankyou again for all your kind words they have really picked me up.take care. h x

thankyou all so much for the kind words you made me cry.in a good way though.I have had this diagnosis before i got diagnosed with pots which apparently i dont have and have seen many therapists but my symptoms never disappeared.Whats happening is i get new symptoms that last about a week then they go away and a new one comes.I was having electric shock pain in my legs a couple of months ago and now they are back.Im the first to admit that i do have problems with my emotions.But in my heart of hearts i always new that there was something wrong with me.Anyway i did see a physciratrist who told me that all my tests were negative so its physcological (sp).Also the neuro i saw was the best i think and if he cant find whats wrong then noone can.I have been told so many times that it is in my head.So i guess i have to start excepting it and to stop wasting the doctors time.I have no other choice.strangely enough i have never had my ears tested and i still dont know why i feel drunk most of the time but i guess that a symptom of a conversion disorder aswell.thanks again for your kind words but i feel i have no other choice but to except it.then maybe it will disappear. thanks h x

hello everyone and welcome to the new people that have joined.You will have alot of support from the lovely people on here. Well i thought i would update you.As many of you know i have been struggling with problems walking,balance and coordination problems and cognitive problems.I have had many tests but the only thing that showed up was an eeg which showed slowing.So my final diagnosis has been a conversion disorder.I am due to go into hospital again soon for inpatient therapy.I have been told i dont have pots and have been discharged from my neurologist. I still suffer the symptoms of dizzyness and tachycardia but not as bad as i used to.I also feel like i am drunk most of the time. I have to go to see a specialist in cognitive function and have another cognitive function test because i did badly on my first one. Depression has hit me hard.I am accepting this diagnosis because i cant keep fighting with doctors anymore.Its going to be a long road ahead.I just wanted to update you and wish you all well and try to keep positive.I will not be posting on here anymore.But might stop by now and again just to see how you all are doing.I want to thank everyone for there support and kindness. take care. h x

how do you tackle your fatigue.I get it so bad that it stops me doing anything. Any ideas of how i can overcome it? thanks

sorry cant offer any advice.I hope it gets better soon though. take care. H x

does anyone have numbness on the front of there legs.Thhis is another new symptom for me.It feels like my trousers are touching it all the time.but there not. thanks h x

hi, my bp is low through the night.It was 86/46 in hospital which is low for me but its not to bad during the day except when i lay down.,then it drops again.. I'm sorry i dont have any advice about what to do. hope you get it sorted. H x

hey again. he does the standard physical examination in the first appointment. And then you might have to wait for the whole battery of tests. I think the waiting is the worst. Email me if you like because i'm sure you have many questions. take care and stay positive. It will all work out in the end. H x

hi, i'm from the uk. Whereabouts are you from? H x

hi, i am also from the uk.I am under prof mathias and he is lovely so don't be scared. When i saw him he wanted me in hospital for five days of tests. I had a tilt table test,mri,eeg and some other ones that i can't remember. Have you been diagnosed with POTS? In my forst appiontment with him he took my medical history of symptoms and did all the normal neurological tests. I hope it goes alright. best of luck and don't worry. take care. H x

Thankyou you so much for wishing me luck. I have to go into london hospital again for more tests. The doc said thats its not POTS related. Im not sure if they will ever find an answer though. Thanks again for all your support. take care. H x

I am going to london tomorrow to see the neurologist. I'm hoping finally i may get some answers as to why im having so much trouble with walking and getting lots of strange symptoms. I Just wanted to say please wish me luck for tomorrow. Thanks Hayley take care.

hi, i have numbness in two fingers on my right hand and and the right side of my face. I don't know why this happens or if it is a symptom of POTS. sorry im not much help just thought id tell you i have the same thing. H x

Thanks for replying.I had an mri done which was negative.The symptoms just concerned me because i never had them before. . I also keep falling over alot.And my right eye feels like something covering part of it and is blurry. I hope to find an answer one day. I am not on any tablets at the moment. thanks H x

hey, ive just got out of hospital after two weeks. I was having problems with balnce,speech and walking and cooordination.And also i had facial numbness, and exhaustion. The doctors couldnt find out why.My eeg came back abnormal but they werent concerned.Anyway then i actually realised that maybe its the pots. I guess ive never taken pots seriously,silly me.I was doing alot better then i suddenly lost all concentration and went down hill but i ddint have my usual pots symptoms where i feel faint.Thats what i thought was odd. Anyway could someone tell me if this can happen with pots and its about time i took it more seriously. sorry for being so brief my brains not working. take care h

nice to meet you faithinspires. Today i had to give up work again as I'm to Ill to go. I feel so angry with myself for giving it up but i have no choice. I just feel like I should work. I should be out there living life. I thought i was getting on with things but i just have to accept this is what happens. I feel such a failure. Sorry for moaning but i needed to. Take care H x

hi everyone hope your doing ok. Ive had a strange week really. I went to physio yesterday and she was worried about how bad id got with my walking that she rang up my doctor. I went doctors today and hes going to try and get me in with the neurologist as my next appointment is in january. Ive had to cut my hours down at work. So im only doing 3 instead of 4 hours a week but i may have to give up working because its to difficult. Just thought id let you know how i was getting on as i haven't been up to replying to many posts lately. thanks h

thankyou for replying, I have eds III aswell. Is this part of eds. I do have physio but its not helping anymore. Hopefully it will go away. thanks again h x

hi, Im having problems with my legs lately. They keep giving way and i fall to the floor. Its only happened in the last week and happens qiute a few times a day. Does anyone have this. Thanks h x

hey, no it isnt possible ive given up on doctors,i just get on with things now. hope you have a good day at college. take care h x

thanks for replying. I was actually thinking of trying st johns wort.Do you no how long it takes to work. I went to work yesterday and struggled so I have cut my hours back to only 3 hours a week instead of four.Its not many hours but it gets me out of the house. thanks h x

hey, i need a walking stick because my balance is way off and i have eds III so i have bad joint pain. take care. h x