Not Happy With Neuro Report

[louloutinks]

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.

[lieze]

I didn't read it that way at all.

I think he is still looking for issues there.

Your reflex responses are not indicative of a psychological issue-I don't think.

[RunningWild]

I agree with lieze- i think he is considering that idea- but also sending you for more tests to figure something out. Don't fret hun. Not all doctors think we're crazy

hugss!

[HopeSprings]

You need those tests Tinks. The symptoms you've been describing deserve a closer look. I wouldn't worry about his opinion for now - just have those tests done and see if they reveal anything. I have been in situations many times where the Dr. was pretty much useless, except for his ability to order testing and bloodwork. Although I agree with the others in this case - it doesn't sound like he's dismissing you (just yet).

[louloutinks]

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.

[JennaC]

I always take doctor's notes lightly... According to one doctor, I am likely a former heroin addict because I admitted to experimenting with drugs.

I would definitely go through with the testing, but understand that we are very difficult for doctors to grasp. They are trained to find a diagnosis based on testing and symptoms, and unfortunately we are outside the scope of knowledge for most trained medical professionals.

[anna]

This would not happen to be a report by a Prof. M would it?!!!

[louloutinks]

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.

[louloutinks]

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?!

[Maiysa]

HI Tinks,

I don't know what organic means in this report, but it looks like he is at least considering some possibilities. But....I am curious and hope you don't mind me asking but do you have any type of spinal injury? I ask because I was also told I have episodes that they call autonomic dysreflexia which is another name for hyper refelxia. I was told by the neuro that it's usually in people with spinal cord injuries in which I have none. But this is a terrible episode and I have almost not made it a few times. I was told I'm not getting oxygen to my brain when these happen. Sometimes I turn blue. This can be brought on by medication, a cold or flu, or a car ride. And I feel terribly drunk afterwards and on many days. I'm curious to see what they find with you. Do you also have these episodes?

[louloutinks]

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.

[Maiysa]

Oh that sounds terrible....choking fits. Bless your heart. Yeah, hyper reflexia of the limbs. I had not heard of that but it does sound awful. When I have the episodes my arms will become paralyzed and then they fly up. I have came out of a black out to with my arms in the air. The people at the MRI place were saying...what is that? Like I was some kind of freak. It was from the breathing test that did it. Anyhow, that's where they came up with dysreflexia. Anyhow, I know what you are saying about the street lights. I'm only 47 and have stopped driving at night. It is really scary for me...unless the moon is out, it helps to light my way a bit easier. I was at the Apple store to get some help with my computer and it happened in there also, which makes it the 3rd incident. I can't tell if it's just too much stimulation with all the computers and people or the noise or the heat, but it is definitely the perfect storm. Anyhow, feel better soon. And I hope you get some answers. Happy Holidays and Merry Christmas to you.

[louloutinks]

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.

[Maiysa]

Yes, what is this organic thing that the doctors are talking about? Did you tell them you're not a piece of fruit! Of course it's organic if it's happening. Who would want to create these reactions. Seriously. Have you ever had the QSart test? That showed most of my problem. It was a bit pricey but well worth the answers.

Merry Christmas too! I hope you are feeling well today.

[louloutinks]

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 !!

[Maiysa]

So glad you can chuckle at such a yucky situation. IT helps doesn't it. Okay, yes, physiological makes more sense. Oh my gosh, I am surprised that you have not had a Qsart test. Check into it if you can. I know Mayo has one. I had mine done at Mayo in AZ. It's something like a TTT, but with no injections...thankfully. You are ran through a series of tests and the electrodes or wires, are hooked to your legs and arms if I remember right and it measures your sweat and blood pressure etc. while tilting and deep breathing. If it weren't for that machine right now, I swear I would feel like I was crazy, because nothing was showing up for me on anything. But people with my disorder have low sweat which is a sign of a dysfunctional autonomic system and I had 0. Which means mine is really damaged, but only in certain areas. It was hard to find a machine though. Not a lot of hospitals have them. I have found about 8 in the US. I had to pay out of pocket and I want to say that it was anywhere from $700 to $1,110. Something like that. I could be a few hundred off. It's been awhile. I had a negative TTT so this was more helpful for me. Maybe you could bring this up for them to get you a test. There are treatments....if this is the problem. I unfortunately can't take them, since I've had a fungal infection. But at least we know more of what we are dealing with. Not saying this is your issue, but it's good to rule it out. It is really rare to have I have heard.