Lack of reality and heavyness

[tmmontgomery]

Hey yall,

So I have already seen a neurologist once, this past week, and he is ordering an MRI, which I should have done this week. But just curious about the symptoms that I'm having and if anybody has experienced them. My nuero said that I could have possible dysautonomia, or some cardiac problem. Either way, here's what has happened so far. I apologize if this is long. Just wanted to try to get everything in.

I am having the sensation that I'm not in reality, almost like I'm in a dream. It could be described as a "foggy" feeling but the discomfort of it has caused me to sit at home for a month. And everyday it seems the same. The disconnected feeling is probably the most prominent symptoms I'm having, I've been off work close to a month now. I am at my wits end. I feel like I can't function and preform basic tasks. I have the sensation that my mind is changing, almost like I don't really know myself anymore. I've had this rubbery feeling on my left side, predominantly in my left foot, but I've also had fatigue in my left leg (feels like I've ran alot, but only in my left leg.) I'm generally tired and fatiuged, when I get up in the morning I feel like I'm in a foreign world. When I walk I feel like the floor is kind of floating almost. I have no trouble keeping balance or walking though, it all seems normal. I have had a weird feeling in my left side, almost as if it's fuller than the other. Had some eye pain, but no double vision really, no color loss or change of contrast...which are some of the things that they look for in MS. I just went to a neurologist this past week, and he did a thorough physical exam. He said in about 95% of the patients, he can tell immediately, even without brain imaging, if there is something wrong. And he said my physical exam was perfect. I even mentioned that my eyes have been blood shot and feel tired (thinking that it might be Optic Neuritis) but he was very confident that I didn't have it. He did go ahead and schedule an MRI which I should go in for some time this week. He said the fact that I was having no loss of balance is a very good sign that I don't have MS, also the chance of having MS is lower because you're a male. The constant feeling of not being yourself though is so frustrating... This actually all started in 2006... when I started having this feeling that I was in a dream. Like I wasn't really here. I did so much testing, went to SO many specialists, including TWO neurologists who said nothing was wrong (although I didn't have a closed MRI, only an open one.) The feeling debilitated me, I couldn't do anything. Riding in a car was even a big challenge. Finally I saw a psychiatrist who said that I could have some anxiety, so he prescribed Lexapro which seemed to help. For some reason though, I was still worried that it could be something physical. But, I started feeling a little bit better, so I just basically lived with it. Things felt different, not like they used to... I would also get these bouts that I thought I was going to pass out almost, almost like a panic attack, but I don't know if that's what I was really having or if it was being caused by something else. It has been going on and off since then, until about a month ago when I got the pass out feeling while I was out to eat with a friend. I just felt very strange. I had to leave, and went home. The drive home was awful, the weirdest I've felt in a really long time. When I got home I was shaking, chills, couldn't sit still, starting to feel the "funny feeling" as I like to call it. So I came home from college to mom, and we went to the doctor. They tested me for stuff in my blood and said I had mycoplasma pneumonia. Fine. I took the medicine, and started to feel weirder and weirder. Stopped taking the medicine, went back to the doctor. Told him I wasn't feeling myself, like i'm in a dream, etc and he said it could be the medicine. So I tried a different medicine. No luck. Kept getting worse and worse. Then the feeling in the foot started happening. I was also having trouble talking. nothing bad, just felt like I couldn't come up with the right word sometimes. I also felt like my train of thought wasn't right. I couldn't concentrate as well. I just didn't feel like my normal sharp self, because I'm always on it. I went to the ER because at one point I felt like I was going to pass out... it was such a weird feeling and I was so scared. They did bloodwork and a CT scan just to make sure there was nothing wrong and everything came back normal. So then I went to see a neurologist. Waiting to see the nuero felt like the longest wait of my life.  The nuero said one thing that it might be is dysautonomia. I've been feeling so weird that I'm scared to drive a car... I haven't driven in at least two weeks. Probably more.

So all in all, I'm wondering if any of my symptoms line up with dysautonomia? I need some answers... I've been out of my life for a month and it's very scary. Just wondering what it could be!

[LivingInHope]

Since your blood pressure is consistently higher than what the doctors now desire, did none of them ever try you on blood pressure medicine?  Your difference in pulse the way you describe does not meet the criteria of postural orthostatic tachycardia syndrome.  However, I'm not sure you did the orthostatic blood pressures and pulses the right way?  May I suggest?  
First, lie down for ten minutes, then take your blood pressure and pulse.  Then, stand up for at least one minute, and take them again.  Your body should be able to adjust in about one minute to the change in position without a huge difference.  Tell me what numbers you get?

I know high blood pressure can cause headaches anyway, and that prolonged high blood pressure can increase risk for stroke, so I hope you and your doctor can find a blood pressure medication that works for you.  There are various reasons for peripheral neuropathy and the neurologists only can figure out the cause in a certain percentage of cases with the tests they know to do.  For a parent of mine, evidently MGUS is the culprit of bi-lateral peripheral neuropathy.  But for many, the cause of their peripheral neuropathy remains a mystery.

[jonesnc]

I have weakness and numbness on my right side and extreme fatigue.

[tmmontgomery]

And one more thing... would OI have anything to do with weakness on just ONE side of my body? Or do people usually get the weakness in both their extremities? The whole feeling of fatigue is throughout my whole body, but i only really have weakness on my left side.

[tmmontgomery]

And also, he did not even take my blood pressure when I was in his office. He did do a physical exam though (that was about two weeks ago) and said that everything looked fine. I had to walk in a straight line, squeeze his fingers, etc etc. I was hoping that he was going to schedule some type of nerve study. And I was just looking, and my heart rate does change when I am standing. I just took my blood pressure and it was 133/92 with pulse of 108. I took it again and my heart rate went down to about 85. Interesting. I am looking at the symptoms of orthostatic Intolerance and they seem to be dead on.

[tmmontgomery]

LivingInHope,

That is exactly what I was thinking... when I went in for my first visit he was more about checking me than me telling him my symptoms.. So he basically told me to hush while he checked me physically. Which I can understand to a point, but of course as soon as a I said "feel like I'm going to pass out" he said 'We might want to do a tilt table test'. It seems like he was not interested in checking for any other neurological diseases, but I guess maybe the MRI ruled those out? (since I dad have an MRI of spine and brain.) I guess I wouldn't really have a problem with doing the tilt table test without the IV medicine, the thing that I just keep saying is my blood pressure isn't going low! at all! It has always ran high.  I have been taking 3 measurements on each arm three times a day, to get a really good average, and it is always high. Anywhere between 130/85 and 150/91.

I think that the basis for him wanting the til table test is that I told him about a month ago that I DID pass out, but it was from me hitting my toe and seeing the sight of blood. From what I can tell it had nothing to do with what I'm feeling now. So, could the pass out feeling be caused from high blood pressure??

jonesnc,

I know, it might be a good idea. But as I said, my blood pressure never runs low. As long as I can remember it has always ran in the prehypertension or hypertension stage 1 range.

[jonesnc]

I was having the same symptoms you described and the tilt table test confirmed orthostatic hypotension. I am taking Florinef and Midodrine for it and they have made all the difference. I think the tilt table test would be worth it. If nothing else it would rule it out.