Libby Posted February 5, 2011 Report Share Posted February 5, 2011 I've been poking around the forum, trying to get a feel for it all. Turns out my perception of what's 'normal' and what's a symptom is waaaay off. I have been writing off symptoms as just normal quirks, or my imagination. None of them really make day to day living impossible, and no one seemed to be concerned if I mentioned one, so I just got used to ignoring them.It looks like I really minimized my symptoms when speaking with the doc and I'm afraid that when I go back for my followup with all these 'new' things wrong, I'll look like I'm a hypochondriac nutcase. I'm just trying to get a handle on what I should be paying more attention to. Are any of these connected to dysautonomia? The symptoms I've read about just seem so random and unconnected that I don't know if I'm being ridiculous or oblivious...- little jolts of electricity in my arms. Don't happen all the time. They're not painful, just strange.- when I turn out the lights and my pupils dilate, my left eye feels weird. I can't even really describe it, no pain, just weird. And my night vision is noticeably poorer in that eye (I have glasses for distance, though I rarely wear them - and my left eye vision is slightly better than my right)- eczema, initially with matching patches on both sides of my body (underarms, eyelids, and hips - now only on my right underarm and right eyelid) which started out of the blue three years ago, - mouth ulcers- muscle twitches (under the eye, my thumb - small stuff)- foot cramps. really painful ones where I have to physically pull the foot out of the cramp and hold it to get it to stop.- a constant, high frequency buzz that I hear pretty much constantly. It gets worse when I blackout, but mostly I've learned to ignore it. Don't notice it much unless I'm somewhere quiet.- leg/arms fall asleep very easily. Legs from sitting, arms usually when I'm actually sleeping. I'll wake up and everything from my shoulder down will be completely numb.- my fingertips turn cyanotic after I eat. Not every time and not for a long time, but it happens.- every once in a while, for a second or two, I'll smell a wood burning (this happened today, but it was the first time in a while. I almost forgot about it otherwise. One that I'll def be mentioning at my next appt.)Thanks in advance for any replies. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted February 5, 2011 Report Share Posted February 5, 2011 Hey Libby,Welcome to the club, we don't let just anyone in here you know....... Excluding the mix and match pupils and the blue fingers, I've had all of these symptoms also. Both the pupils and blue fingers are symptoms of dysautonmia, so don't worry too much about other things going on. I found to never hold any symptoms back from a doctor, if they seem over whelmed it's a good sign you should get rid of them and move on to someone else. Other than that welcome and I hope you pick up little things from others that help you also. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 5, 2011 Report Share Posted February 5, 2011 I know we all have a "mix-and-match" of symptoms that all seem go along with dys. One thing you said jumps out at me--the "jolt" feeling in your arms. I know a B-12 deficiency gives an "electric shock" feeling, so I would definitely have that checked out. Quote Link to comment Share on other sites More sharing options...
Libby Posted February 6, 2011 Author Report Share Posted February 6, 2011 Phew! Good to know. Thanks for the replies! It's mostly my fault. I have some sort of weird mental block against admitting that I'm anything but 'really good, thanks for asking!'. Incredibly helpful for my doctor, I know. LOL. I managed to google myself into a bit of a freak out. That site should carry a warning - hazardous to your sanity if overused. Quote Link to comment Share on other sites More sharing options...
songcanary Posted February 6, 2011 Report Share Posted February 6, 2011 Libby,I was just like you. I 'blamed' myself for strange symptoms, thought I was just weird. I finally got diagnosed with dysautonomia in July 2010 after literally decades of having random symptoms. But after three years of lightheadness and nausea that caused a 15 lb weight loss I got really scared. My PCP blew me off the whole time but I referred myself to Cleveland Clinic where I finally got help. I agree with Sue, you do have symptoms of B12 deficiency, I did as well. I remember my grandmother used to say, 'you can have more than one thing wrong, you know!'. And she was so right. Keep up your quest, and best wishes. Quote Link to comment Share on other sites More sharing options...
E246 Posted February 7, 2011 Report Share Posted February 7, 2011 Hi Libby,Yes, I have mouth ulcers all the time and i have been meaning to post and see if this was common. i have one almost all the time - they last a week and then another develops.I also have odd or uneven vision at night and I had not realised this is probably the pots.My arms also often go dead in the night and are like lumps of meat.And I have ringing all the time in my ears.I feel a bit like you about mentioning all of this to the doctor as I think they just think you are attributing everything to POTS and that you have been on websites. So i am now much clearer and state that i have read this information and somehow it comes out better. I actually asked the doctor last time if there was a web for uk sufferers and she gave me the name of another site.It takes a while to realise how many symptoms are caused by this. Hope you are feeling reassured by all these responses. Quote Link to comment Share on other sites More sharing options...
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