enko

I haven't yet been diagnosed with anything including dysautonomia.. I sometimes think that docs here didn't even hear about it.. Yes, I do feel crazy sometimes.. I'm telling them one thing and they are telling me that nothing is wrong with me, no matter that my records show otherwise.. Songcanary hugs 4 U

I hope everything will be ok

Hi Tinks It's not enough to drink a lot of water, you need to retain it. Try with extra salting. My neuro told me to take a tip of a teaspoon of salt and mix it in yogurt, it would be easier to take it. I think that there are more people here that could be more helpful with salting thing. Tin and tall people may also have low blood pressure too. I'm not sure which values are correct for children, but for a grown up the values you've wrote would be low. Try to check it few times a day (morning, afternoon, evening). If regurgitation is mild they probably wouldn't give him any meds. If it's something larger, they probably would give him something to help stabilize it. They are sending it to London probably to verify it, don't know. As a kid I was very active - training all kinds of sports, but then I've started gasping for air (practically choking), having palpitations and tahycardia and feeling really weak. Some time after I started getting presyncope (almost fainting), elevated body temperature for no reason, nausea, feeling weak, headaches.. For years I'm trying to sort that out with my doctors, but it's not working so far In the background there probably is some kind of ANS dysfunction, one neuro told me that, but won't write anything officially until I'll have brain MR. With my remark about energy saving I meant that he shouldn't do something that would exhaust him too much (I get tired very quickly too), but he can't be totally passive either. Walks or some mild exercise would help him strength his muscles and feel better. Don't worry that much, a lot of people live "normally" with MVP. You just need to do regular checkups. I hope that everything will went well.

Hi Tinks, I also have MVP (I'm almost 28), was recently diagnosed. Neuro said to me that it might be because I'm very skinny (it seems to be more often with skinny people). They do blame MVP for a lot of things - fatigue, headaches and other.. For now, he "only" needs to be careful about his energy reserves, use them wisely and go for checkups every year or whatever your doctor said to you. I hope that regurgitation isn't too big - you didn't say anything about it, but since docs didn't give him something for that, it may not be such a big problem. Some children grow over it. And one more thing - it seems that it might have something to do with low blood volume (and perhaps low blood pressure) - make sure that he drinks enough of fluid (under that I don't count juices, soup or other, just plain water besides all other he daily drinks). For me that's two liters a day, I'm not sure about child of his age.. How much of salt does he daily intake? It helps retain water, you could try to salt food just a tiny bit more, to see will it help. Don't overdo it, it might have contra effects on his blood pressure. Ofc, I'm not a doctor, but I hope that this helps...

That is just awful I'm sorry.. I hope that things will start to get better soon..

*hugs* Hold on! I know that you're feeling bad.. just hold on!

Kcmom thank you for the hint about checking bp. My worst time of the day is definitely morning. I'll check it then. I was trying to get that autonomic testing, but they refused me because AV blocks in my EKG Holter reading.

Thanks, that's the article I was looking for 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?

Lizababy, I have similar problem. I don't work well either with cold or warm weather, but I do stand better the warm days. Still I can get nausea and fatigue feelings, not even to speak about presyncope.. Our a/c is also on 20-25C, but I can't stand it for long because I get headaches, even I'm not on the direct path of the flowing air. Weird.

Naomi, you are really made of gold! Laying: 88/54, HR 76. When I've got up: 108/70 HR 111. To be honest, this doesn't make me feel better. 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..

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..

I do have twitching in my legs from time to time, but I would say that it's more RLS, it's not as severe as dystonia. Blown off? I feel like that more and more..

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

Reen, thank you very much for the link! I'll snoop around I've also found http://www.dystonia-foundation.org/ My second neuro is more approachable, I think I will give her some info on dysautonimia

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..

I'm feeling like that people..

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

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 ). 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

Hello my fellow bird lover, (still missing that hug smiley) thank you for the support 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

Thank you for replying Naomi 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..

I recently started something that is basically Zyrtec (Letizen, not available in US), I have no side effects so far and my itching has reduced

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 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..

That's just awful!

Hold on there Naomi

Congrats