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Neurovegetative Dystonia


enko
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Today I've seen my new neuro. After listening to me and checking my medical history, she said that she thinks I have something called (or what used to be called) neurovegetative dystonia. I've asked Google about that - somehow I cannot escape the feeling that docs think all of my symptoms are just a product of my head, and this dystonia basically means that, as much as I've managed to grasp so far :blink:

She also recommended brain MR and to come back with the results, just to rule out some awful brain disease.. I've managed to get a date 3 months from today.. :wacko:

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Well, that's a new one! You're right - google doesn't provide much insight. I know dystonia has to do with involuntary muscle contractions - do you have that? If she is sending you for an MRI, hopefully that means she's taking you seriously. Did you get the sense that she thought it was a mental health issue? If you liked her and will continue with her, I would ask for clarification on the diagnosis. 3 months seems like a long wait for an MRI?

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Thank you for replying Naomi :wub:

Well, I have something.. lol, I would say it is RLS (my legs twitch when I'm in rest). I've said that to her and didn't get much of feedback on that one. She's better than the first one, she would say "No, it doesn't" on whatever I've asked.. I've just a bit of confused right now.. :( Actually not just a bit :( Feeling like a nut case (again). I'm not sure what to think of what she said and wrote (also wrote that I'm poorly fed, that's like that you've wrote that I'm anorexic, I've lost a lot of my weight after apendix operation).

In my country waiting lists are long for whatever you're signing for - unless of you're willing to go to some private doc and pay for it.. :(

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Hi Enko,

A new one for me as well. I think Naomi gave you good advice and I can't get much out of google either. But this doctor is a neuro after all, and maybe this wording is what she knows. I mean, maybe they use fancy language for something more simple to another doctor. I don't know :blink: On the other hand, if you do have symptoms that are stress-related, it would be no surprise to me because I have that and I am really working hard to reduce my REACTION to stress. It helps a lot, but it isn't easy by any means.

I had to wait two months for a TTT so I know what you mean about the wait. At least she doesn't think it is anything life threatening or you would already be done with it!

Hang in there ;)

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Hello my fellow bird lover, (still missing that hug smiley)

thank you for the support :wub: I guess I'll have to wait for 3 months more and see what will happen.. in the meantime she told me to start with Seroxat, but with smaller dosage that the other doc suggested.. I should start with 2,5 mg and increase every ten days for another 2,5 mg until I reach 10 mg. Also I've got B vitamin supplements..

Oh and I failed tandem gait test today :lol:

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OH JUST GREAT...

went to my GP to get that Seroxat and start therapy. Then she checked my records and said that there isn't an official diagnosis on it, just prescribed therapy, and said that she won't give me the med (my beautiful neuro fails to write dx and at least half of my symptoms on all of my records that I have from her :angry: ). I looked at doc with shock and it didn't matter that I've said that there is a reason why the doc prescribed it, and why the second neuro I've seen yesterday confirmed the therapy. I've showed her what other doc thinks might be the problem (as stated in this topic title) and she said it's just neurosis and then she referred me to psychiatrist.. :(

I just hate all of this :angry:

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Well that's annoying (and confusing). Have you had any autonomic testing done? Do you think you have POTS or some other form of dysautonomia? Maybe you need to find another Doctor with knowledge of these conditions. Have you done any informal testing of your own - checking BP and heart rate laying and standing?

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She did say that I could do the autonomic testing but when ppl in the lab have seen my cardio results they've said that it won't go because I have recorded AV blocks (and I still don't know what is that and how does it affect the autonomic testing).

I do think that there is some type of dysautonomia in the background. So far I'm dxed with presyncope (she didn't ask for TTT), low BP, urticaria and mitral valve prolapse. My eyes are a story for itself - glaucoma, nistagmus, retinopathy.. other symptoms: palps, headaches, nausea, feeling lightheaded and confused totally, memory issues, appetite issues, balance problems, can't stand cold or hot temperature, can't stand physical work.. Don't want to go to other symptoms here, but there's a lot of them.. I think that you know them well :(

I didn't try to take my HR and BP in standing and laying position.. I'm afraid if I'd do that now and then come with that to my doc that would only dig me in deeper in docs eyes as a psychiatric case :(

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I don't know about you but I'm starting to feel sorry for most of the people ever diagnosed with neurosis.

The feeling I'm getting is that they were really sick and experiencing horrible symptoms and no one would take them seriously.

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:( One day, none of us will ever be misdiagnosised. That is a horrid thing to do to somebodies pysche.

I've been there my self, not with that dx, but I do n=know how horriable it is to receive a psych dx when you, and those close to you, know you are ILL!

Hang in there everybody *hugs*

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enko, could you tell us where you live? there might be people around here (at the forum) living in the same country who can help you find a dysautonomia specialist. you could also check the website, there's a list of doctors recommended in countries all over the world. i'm in the netherlands and my ans doc is the best in my country, so i'm always very happy to help people in my country by referring to him.

do ask why the recorded av blocks keep you from the ability to do further testing, it's easier to accept when you know the reason!

good luck getting the help you need,

corina :)

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I'm in Croatia. I've already checked the list. Nearest doc is in Slovenia an Austria but I think my health insurance won't cover that.. and I don't have any money right now :( And even if I would be diagnosed by any of them, I don't think docs here would accept that diagnosis..

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Hm.. can't found anything about NVD there.. it seems that it's something different...

Do you have any trembling or severe muscle contractions? dystonia is a movement disorder and a rather painful one, at that, so I would think you would know.

The references I see refer to neurovegetative dystonia as a menopausal symptom or as a panic attack/anxiety disorder. Could be you have been blown off.

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Read information on the following website. Also read beyond the NVD diagnosis through the Dys info. It sounds like it is all classified as a psychiatric disorder. Also, google just the first word (neurovegetative), you will find more hits.

http://www.greekmedicine.net/physiology/Brain_and_Nervous_System.html

It sounds like NVD is the "old" way of thinking for doctors that just don't know better. Shame on doctors that don't do better research before making a diagnosis.

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TLC's Mom thank you for the link.. I've found that one too. Yes, it seems that they are treating that as psychiatric disorder :(

Anybody have any good links on some short and sweet text about dysautonomia that I could give to my neuro? An article from a doctor would be great. Does Dr. Grubb have something like an intro? I guess that she won't be thrilled with reading a lot of text, so for beginning I would give her something small.. I think that brochure on the main page is a bit too small..

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"I didn't try to take my HR and BP in standing and laying position.. I'm afraid if I'd do that now and then come with that to my doc that would only dig me in deeper in docs eyes as a psychiatric case "

I would still test it out - even if just for your own knowledge, to get an idea of what your body is doing. And if you have it recorded on a BP monitor, plus bring articles maybe the Dr. will be more apt to listen. Maybe what you're experiencing is related to the MVP? Here's a little quote from Medicinenet.com:

"Fatigue is the most common complaint, although the reason for fatigue is not understood. Patients with mitral valve prolapse may have imbalances in their autonomic nervous system, which regulates heart rate and breathing. Such imbalances may cause inadequate blood oxygen delivery to the working muscles during exercise, thereby causing fatigue."

I just don't understand why they won't do the autonomic testing - I would ask for clarification.

Here's a good article I posted a while back:

http://knol.google.com/k/postural-tachycardia-syndrome#

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Naomi, you are really made of gold! :wub:

Laying: 88/54, HR 76.

When I've got up: 108/70 HR 111.

To be honest, this doesn't make me feel better. :wacko: How big time delay should be between that two test?

Do you maybe have something more general about Dysautonomia? This article is just about POTS..

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If you were to go for an official tilt test, it could run anywhere from 10 to 40 minutes. Mine was 10 minutes and symptoms appeared within the first few minutes. So if you get an increase in heartrate over 30 BPM or up to 120 BPM (and uncomfortable symptoms) within the first twenty minutes (but most get symptoms within the first 10 minutes)- they'd likely diagnose POTS. Yours went up 35 beats during your informal test. I am no Dr., but it sounds like POTS. I doubt I am telling you anything you don't already know. I hope you can get an accurate diagnosis because there may be medications or treatments that can help you. Here's a general article about dysautonomia.

http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm

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Thanks, that's the article I was looking for :D

Nor my family doctor, not two cardio and two neuro docs didn't ask for TTT. Am I the one that's supposed to ask for it? :( It's like that I have "hypohondriac" written on my head and nobody takes me seriously :( I guessed that they'll do TTT in the autonomic testing, but now I can't know that, can't I? :lol:

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