louloutinks

Hi all, i am trying to login on my iphone but have forgot my password as it automatically signs in on my pc.

I have looked for my logins in my email folder and have only founf user ID number and activation email.

There is no record in my settings online either, so how do I find out my password??

Thanks, Lou

wow Brye, I feel bad enough in the 50's let alone the 40's! Give me a faster heart rate anyday lol! My mouth is watering like I am going to be sick -but I am not!

Hi all,

I have noticed that when I get a slow (well what I call slow) heart rate, it makes me feel quite bad. My breathing gets very slow at the time and I feel a bit nauseous also. I just don't feel right.

My heart rate tonight only went to 57 at its lowest which I know is not that low but I feel pretty rough with it. My resting heart rate is usually around 84.

What causes the HR drop...it this part of pots.

Lou

Edit to add, I feel chills with goosie bumps at these times too.

Hi Kim,

its amazing what dysautonomia can cause isn't it. I take it that is what they have put all your symtpoms down to?

I did ask the neuro if it would cause my symptoms and he said no - but don't think he is an expert in the field.

I have the trembles in both arms, like you. They wake me up at night as they are so strong (waking me up is like waking the dead!).

I am still waiting an appointment at the National Neurological Hosp in London - I have heard they are VERY understanding there and do not label you because of your symptoms. I havbe called them and asked to be put on the cancellation list but still have not heard a thing...heres hoping.

Hi all and thanks for replies.

Issie, it is a cute pic isn't it - not real but cute still! You are very upbeat and brave with what you have...lots of hugs to you. I do not think I have a tumour though, I think they are just ruling things out. I have trouble with vertigo and hearing when I bend my head backwards but I am sure yours is a different kettle of fish altogether.

Chaos, I am sure that my leg jerked when the neuro hit my knee so I am not sure what reflexes he is saying were areflexic - I wish I had hyper reflexs and kicked him after I read the report lol!! So the docs are taught to make people feel bad are they - thats a disgrace just to save face.

Hi Bren, hope all is well with you your side of the pond? GP's over here do not have access unless they request the results directly unfortunatley. My little man is doing well - well, as well as well can be......hope you are all ok.

Lemon, would you mind me asking what causes your 3? I thought a lesion was a scar!

Maysia some docs attitudes stink. I bet you felt good to get the dx and shove it under her nose lol.

ENT app soon to find out what is going on with my hearing. Will keep you posted.

Hi Chaos,

ridiculous that they either do not think before they write or they are not sure what is going on. It makes you feel scared to tell them all your symptoms incase they think you are mad.

Yes, nothing to show Peripheral Neuropathy during EMG, thats why I wondered what else could cause the areflexia if it is not that.

Sorry - you know what - I had the Nerve conduction test and not the EMG - d'oh. He sent me for both but got only NCT.

To be honest, I found the buzzing quite nice until he said 'lets try one last thing' and stuck the electrode on the top of my foot....I shot through the roof, squealed loudly and made him jump (lol) - he then gave me the raised eyebrow look!

Hi all, haven't been on in a while and I hope you all are well (as can be) but finally I have seen a neuro about headaches, hearing problems and other bits, like vertigo, numbness etc. I was referred by A and E dept after an awful bout of headaches and they mentioned cranial pressure. They sent a direct referral to the neuro.

He id the neuro exam and I have hyperreflexia of upper limbs (hyper response), areflexia of lower limbs (no response) and an extensor plantor response (babinski).

He sent me for an mri/mra to rule out lesions in the posterior fossa and also any vascular abnormalities that could be due to my EDS. Could anyone explain what lesion in posterior fossa means please and when I googled it came up with tumour but I think it would mean something else as I do not think t is that at all.

This is what he wrote in the report I recieved in the post, get this lol.....'This lady complained of a number of subjective symptoms. On examination the remarkable findings were hyper-reflexia in the upper limbs on deep tendon jerks and areflexia in the lower limbs. There was also extensor response with toe fanning on the right side and equivocal plantar response on the left. The rest was unremarkable.

Overall I am not sure sure whether there is an organic origin to the complex combination of symptons reported by this patient. I would think it be useful to rule out any posteria fossa structural lesions or abnormalities in blood vessels possibly related to ehlers danlos syndrome. Having noticed some peripheral nerve signs, mainly the reduced deep tendon jerks in lower limbs, I think it would be useful to have an EMG......'

Cheek - not organic - how can I make my reflexes abnormal?!

I had the EMG the other day and it showed no peripheral neuropathy at all. What else could cause areflexia of lower limbs. He is not concerend about the hyper-reflexia in my upper arms at all and did not request that I had EMG on them - just my legs. I wished they did test my left arm as I have had tingling in my hand with arm pain for months now - constantly.

Have to see the ENT at start of Feb and am due to see neuro in April for MRI/A results.

Bit concerned about the babinski as I have read that it is ALWAYS pathological (so why he thinks it may not be 'organic' is beyond me.

Haha Maisya you made me chuckle ........I should ask him if I am a piece of fruit lol!!!

Think it means physiological rather than psychological. Have never heard of the Qsart test - if it is expensive then I cannot see the NHS running it !!

I presume it is just an over reactive reflex Maiysa.

Sounds bad what you have to deal with but at least they are helping you and dealing with it.It must have been a worry to have reactions like that and to see them surprised by it.

I am going for the tests - think I was just a bit annoyed with the Drs ambiguity within the space of 2 sentences. One minute he is saying the neuro exam showed signs of something going on and the next he was saying he was not sure it was organic which just made no sense to me. Surely abnormal reflexes are organic??

Merry Christmas to you too and have a lovely holiday.

Hi Maiysa,

I only have very slight scoliosis but no spinal injury. It was thought that I had thoracic outlet which is compression of nerves but that was ruled out. The only sensation I am getting similar to being drunk is not quite dizziness or vertigo but it seems everything is bobbing about. And I have noticed this is often made worse when I drive my car at night but is accompanied by nausea, sensitivity to car/street lights and ensues a headache or I could be just washing up or something.

I think they meant hyperreflexia of my limbs duriing the neuro exam. I do have horrendous choking fits where I cannot breathe just make an awful noise with the air going in.

Sorry Anna - I obviously didn't read correctly - not PROF m but another Dr M. Am due to see the prof I think you are referring to though.

Jenna that must have made you feel awful to read that - where do these doctors get off?!

Hi Anna yes it is ...why is that lol? Not the one in London mind if that is the one you mean. I feel a bit exasperated to be honest.

Can hyper or no reflexes be non organic? I know I haven't 'felt right' in a while but I finally thought things were going to be sorted. But after reading this report I am not too sure I am being taken seriously.. He also said that I presented with 'subjective symptoms' but I am now worried that if nothing shows I am just going to be labelled as others have been.

Just received a report from the day I see the neuro. Heres an excerpt..

'On examination the remarkable findings were hyper-reflexia in the upper limbs on deep tendon jerks and rareflexia in the lower limbs. Toe fanning on the right side and equivocal plantar response on the left. The rest was unremarkable.

Overall I am not sure sure whether there is an organic origin to the complex combination of symptons reported by this patient. I would think it be useful to rule out any posteria fossa structural lesions or abnormalities in blood vessels possibly related to ehlers danlos syndrome. Having noticed some peripheral nerve signs, I think it would be useful to have an EMG. I am also referring her to ENT for her auditory symptoms.....'

So it seems it could be non organic and all in my head lol!! Makes me feel like I do not even want to bothered to go through the EMG, MRI/MRA if they are going to tell me its all in my head which I have heard some other people say they was told on here.

Really not sure how to feel right now.

Ooh er....mine was 86/84 hr127 yesterday -so much less than 20 gap.

Hi Katy

I did ask the neuro if ear problems were autonomic and he said definitely not. But will let you know for sure when I gwt to see ENT.

Hi and thank you RubyTuesday. Glad you have faith to get you through your worries. I think I should take my mind off of this and looking on the internet is not helping as it mentions tumours and MS or the like

I thought I had a trapped nerve causing all my headaches, hearing problems and numbness (etc etc).

Hi Naomi,I am concentrating on the question mark as I keep telling myself that there is no point in worrying about something that is 'just a thought' by a neuro and wants investigating - nothing has been proven yet but it is hard not to worry...

He is also sending me for an EMG - he mentioned peripheral neuropathy and I am finally going to see an ENT which I am over the moon about as hearing constant whooshing, ear pain and tinnitus is driving me mad.

I saw a neurologist today and he is sending me for an MRA.

He has written 'lesion in posterior fossa?' on the form and 'plantar response ® equivocal (L) '- which I take is Babinski.

Any ideas please as am worried.

Hi look up BPPV

Hi Bren

I get petechiae. They start off red, turn into bruise coloured spots and fade after about a week. They will be looking into it when I visit London Neuro Hospital.

Have you got them on your lips and inside your mouth too? x

disequilibrium?

Hi Rich

I get this too - it is an intense burning kind of ache in my legs and feet which makes my legs feel weak too - and I get blood pooling

Hi Futurehope,

I have read about that but it says 'prolonged' which this isn't - fleeting moments more like!

Hi Bren...I've not died yet from it lol.

It happens too many times a day and glad it still works of course but just at the wrong times!! Hehe

Brave but highly embarrassed but it has been happening for some time now and I really needed to know. Thank you for replying.

Very true Sue - couldn't imagine asking this anywhere else - not even the doctors lol!! Just my luck to get vasoconstriction/dilation there lol.

On a serious note though, I have tried to find out about autonomic system and this but have not found much whatsoever.

I take it you have it too Naomi - have you told your doctor?