Seen A Neuro.....areflexia, Hyper-Reflexia, Babinski

[louloutinks]

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.

[Chaos]

Can't really help as far as what he's looking for. Most frequently lesions in the brain refer to some type of new growth (i.e. tumors) but could be other things as well. Have to say I've never seen anyone be able to "fake" a Babinski reflex abnormality. What DO these doctors think...or DO they think at all? Have to wonder sometimes.

Sorry you have to have this kind of negative feedback from the doctor when you're having all these symptoms to begin with. That can't be helping you out.

I've not had an EMG but know of some others on here who've had enough symptoms to warrant them and they haven't found any abnormalities either. Odd that there wasn't any abnormality when you have areflexia. Guess this is why we're a puzzle to so many doctors. Our symptoms don't "make sense" in the current medical model so they want to blow us off. I guess that's just human nature to some degree until you feel all this wacky stuff in your own body and KNOW you're not making it up.

Hope you can get some answers soon.

[louloutinks]

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!

[issie]

Don't really have a comment about this. But, couldn't help but notice the picture of the kitten. Is that for real? Oh, how cute.

Issie

[Chaos]

LOL. Maybe you should have kicked him in the teeth when you jumped. (Just Kidding).

I have to say I've been relieved NOT to have EMGs done. I figure if I still worry about having all those needled stuck in me, then I probably don't need to have one done. LOL

I've had some neuros comment on my decreased reflexes ("where are they hiding?") but then they go on and always write that they are normal. Whatever.

I hear you on the NOT mentioning all your symptoms. I've not mentioned a lot of things to my docs for that very reason. Once I kind of "test the waters" I'll have a sense of whether or not I can confide in them. Having worked in healthcare for a LOT of years, I've seen how quick most docs are to blow patients off or label them crazy. It's always bugged me but now that I'm on the receiving end of it as a patient, it REALLY bugs me. I frequently call the docs I work with now on the carpet for doing this to patients.

My brother is a doctor and when I've complained of this to him he said "this is what we're taught in medical school. The doctor has to appear to know everything and can NOT say 'I don't know'. So, if a patient comes in with things we can't explain, then we have to have some answer and it's usually put back on the patient as their problem. i.e. they're making it up or it's psychological."

Sad but true. He's an "older" doctor so maybe school has changed since he went thru but there a lot of docs in his age group still out there practicing.

Sorry you have to wait until April to find out results of the MRI/MRA. That's a LONG time when you're worrying about "lesions in the posterior fossa." I don't know where you are, but I know we can go by the radiology dept and get copies of reports before you see the doctor.

Glad you're back on line. Sorry you have reasons to be on here again. I always hope when people are absent for awhile it's because they're all better.

[brethor9]

Oh Tinks!!! I dont really have anything useful to offer...just hang in there and BIG, BIG Hugs!!! Also like Issie said I would not be waiting until April for the MRI results.... your regular GP should be able to access a copy no problem....stay strong and dont let them push you around!! DEMAND answers..its your body and you know it best....

Bren

P.S Hope your little guy is doing well

[Lemons2lemonade]

Hi Tinks! I am sorry to hear what you are going through. I know little to nothing about EDS. But, i do know about lesions. I have 3! Lesions are areas of your brain that have been damaged. The posterior fossa, i believe, is a part of your brain and is located around the cerebellum by the brainstem in the back of your head. Lesions are areas where there is essentially scar tissue on the brain. There can be a numerous amount of reasons for lesions. They can be caused by brain injury, vascular impairment(stroke), or possibly immuno attack of your brain tissue (such as multiple sclerosis). In fact, a lot of people have lesions on their brains for unknown reasons. I hope this helps, and i hope that you get some answers.

[issie]

Don't panic. I have a brain tumor that has to be checked yearly and also some abnormal enlarged blood vessels around my brain stem area. Nothing is seeming to be causing issues at this point. I have EDS too, and there is a drop of my cerebral tonsils into the canal at the brain stem area - but they aren't calling it Chiari Syndrome - because it's not a 3mm drop - but it is a 2mm drop - that's with lying down. Probably, with the EDS it would be a drop if I were to sit up - but this hasn't been even looked at. They just want to rule out every possibility and that's a good thing. Keep us posted . It's a step to discovery.

Issie

[Maiysa]

Hi Tinks,

Sorry you are having so many issues. It sounds awful. I was diagnosed with something called autonomic dysreflexia-it's mostly in people with spinal injuries and I don't have any so the doctors are a bit confused. I see that hyper reflexia s listed in the same category. They did a spinal tap and thankfully nothing showed up. I also have some jerks in my hands, but haven't seen doctor since this started. I don't know what it is. I did not have any lesions though, so that was good. I'm curious what they find. Please keep us updated.

Anyhow, organic....doctors really amaze me sometimes. They just don't get it. My doctor wrote something about something being psychosomatic before I was diagnosed. I asked her about it and her face turned red. It's easy to write this stuff down when doctors don't have to be confronted with it. I was kind when I asked my doctor why she wrote that and I told her, well if that's what you think then please send me to a psychiatrist. She back tracked and said that she was only putting that in my record so that doctors would stop doing dangerous tests on me. Ummm...okay, I thought. She said it's clear that you are very sick, but I do think you get yourself in a panic sometimes and that hyperventilating can cause blood pressure issues. OH my gosh, I swear I have never hyperventilated, not once. But she didn't care and would not take it off of my record. So I only go to her now for easy colds or something. She just doesn't get it. And even after Mayo Clinic diagnosed me and I quote, I went to her for a follow up and she said, you must be disappointed in Mayo Clinic, that diagnosis means nothing. I have several patients with it! Not a big deal. All I could think was ....wow, wow! That shocked me, especially since my doc at Mayo said what I have is rare. Idiopathic Autonomic Neuropathy with autoimmune aspect. Evidently there is an epidemic in my town of 15,000. haha. I have had to tell myself that I know I'm not well and if a doctor doesn't get it, then that's their issue and I do my best to move on to better docs who understand, but it is frustrating and sometimes it hurts my feelings, but I swear I'm more used to it. I had to kiss a few frogs before I found a prince of a doctor. I saw a cartoon and wish I could find it.....It showed a sick person looking at the doctor-the doctor was standing there with a clipboard and said, well, all of your work ups and blood tests are normal, so you must be crazy. It made me laugh.

Issie, wow your situation sounds tough. Really sorry to hear. Have you ever been diagnosed as a Chiari I? Have you ever looked at the Chiari I diagnosis on line. There was a girl on mystery diagnosis and she had this. She was just in high school and was partially in a wheel chair. They finally did surgery because the Chiari was questionable. But once they got in there surgically they were able to see the problem, it was a Chiari 1, but was causing some serious issues. That surgery changed her life. So it was a happy ending. Not saying you need surgery, but was just curious if the Chiari was looked into further. Just a Chiari 1 for some people can cause terrible problems.

[issie]

Not diagnosised with Chairi, but wondering if there is an issue - with Chairi 0. Doctors don't seem to think so. I can't lean my head backwards or it will cause all kinds of symptoms for me - so feel that there is some sort of compression on the nerves in my neck and with just simply bending my head backwards doing that - can't see how there isn't a problem. Also, have to sit/lie with my head perfectly straight. Part of that is the EDS. But, part of it is the pain I'm in with my neck.

Issie

[louloutinks]

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.

[bellgirl]

I know that hyperflexia can be a part of dyautonomia. My reflexes have always been hyper, and now more so on the left side, including tremulousness. I finally have a neurologist that listens to me. I had an MRI and MRA done. My dad had a cerebral aneurysm, so since I had stroke like symptoms after a virus 13 years ago with a binocular defect in my left eye, I have had many MRI's with contrast to check for these things. Initially, I thought I had MS, because of all the weird neurological symptoms, tingling, heaviness, tightness, shock nerve pain, warmth in different areas, but after the last MRI with no lesions, they ruled that out, but I find it interesting that my eye is still misaligned enough to affect my vision, I've had ear surgery because of a malfunctioning eustachian tube, vertigo and dizziness, and excessive tearing, droopy eye lids, etc., yet no particular reason for any of these things, except my new diagnosis of dysautonomia. I was also tested for Meniere's at the ENT and hearing loss, and there was nothing significant, so I am grateful for that. If I were you, I would find a doctor, who you can trust to share anything. I had to do a lot of searching before I finally found doctors who would listen to me, admit they don't know everything, and are interested in me, my illness, and are even willing to learn a few things, too...hang in there.

[louloutinks]

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.