dkd

I have tingling in my left foot and left hand for almost three years, and tingling/numbness/burning on left side of my face since last October. My first thought was stroke/TIA and then MS, but my neuro said my brain MRI is clear so he's ruled all of that out. So, no real answers

Seems they're part of the complement system. Here's an article I found http://cvi.asm.org/content/10/6/982.full

A doctor--a radiologist--is supposed to read the MRI, not just a tech. Who ordered the test? Ask that doctor at your next appt. Or give them a call and ask that the doc to review it specifically for chiari. (Sorry, I guess this is really advice, not my opinion about chiari )

I had a stress test before I was diagnosed w/ dysautonomia and my HR was 135 before I started. She had already calculated per my weight/age/height that my target HR was 175. I got to that in just a few minutes of walking and she stopped the test. That led to holter monitor, nuclear stress test, carotid ultrasound---all normal. The cardiologist just told me to get more exercise. It wasn't until 4 months later that I saw the electrophysiologist (in the same cardio group) that figured out the dysauto. So you may have more testing in your future!!!

Thanks alex for the clarification of the terms. I just got back from the pulmonologist and at first I told him dysautonomia and he just kind of looked at me, and then I told him the NCS part. I offered for him to read the report but he declined.

My EP cardiac dr diagnosed me with dysautonomia in March of this year. I just got a copy of my TTT and this is the 'conclusion'--"TTT clinically positive for neurocardiogenic syncope primarily the vasodpressor type with a tachycardic response." So, I'm wondering when I go to other doctors (going to a pulmonologist today) do I just tell them NCS? I've been saying dysautonomia up until I saw this report. Thanks! If anyone's curious: supine HR 79 BP 109/70 8 min HR 102 BP 101/78 22 min HR111 BP 95/65 24 min HR 120 BP 66/45 back to supine HR 68 BP 113/71 I didn't pass out, but got nauseous, flushed, tingly at he 24 min mark and the tech put me back down.

I'm curious also. I took an SSRI (lexapro) and did not like it at all. Another dr. gave me cymbalta which is an SNRI, but I've been afraid to take it. I discussed it with my neuro and he told me not to take it. I guess it wouldn't hurt to try it, but I haven't had a day that I can stay in the house all day and see how it affects me.

Just curious--do you take it for dysautonomia or MG? I'm awaiting test results for MG, so this drug might be in my near future. Sounds scary. Glad you're ok now.

The problem with antibody tests is that they can be positive for IgG if you've ever had the illness in your life. You could have had mono as a teenager and your test would probably still be positive showing that you have immunity. If you had a high IgM titer, it would indicate a current infection, but you said you don't recall any recent infections.

Hmmmm, I don't know what to tell you --other than ask your doc--sorry!! Good luck

What do you mean by POTS episodes? I take 5 mg betaxolol once per day and 2.5 mg midodrine 2x/day. The first month, I was only taking the betaxolol and I still had a near-syncope moment and that's when he added the midodrine. It kicks my BP up just enough so that I haven't had anymore syncope episodes since (it's only been two months though). So, if you're episodes are syncope related, maybe you need midodrine also??? I know the betaxolol is working because my heart rate is staying down. If your heart rate is not staying down, then I'd say it's probably not working.

I'm too lazy to figure out how to post pics- haha ! Hope you find some answers soon!

Back to the two dots on your first MRI image--I just looked at mine and I can see those also. I'm no expert by any means, but I think they are blood vessels. When I look at the image before and after on mine, I can see a blood vessel, so I think it's just where the vessel has turned.. Also, that's not far under the skin. I just looked up Chiari and I have alot of those symptoms too, but I remember my neurologist looking at my images and saying to himself "no Chiari", so I know it's something he specifically looked for.

From what I've read, it only stays in your system a few hours (some people take it three times per day), so if you get a bad reaction, it'll be over with in a few hours. I take a relatively small dose - 2.5 mg twice per day. My cardiologist suggested that I up it to 5mg twice per day and I got the tingly scalp, chills, and felt cold. I told him that and he was ok with me leaving it at 2.5. I guess, my point is just try it and see what happens. Good luck!

I would add: ringing in ears

I've been thinking lately of giving up my coffee. I don't think it's the caffeine that affects me so much as the heat of it.

I just tried lexapro for the first time yesterday and I'm not going to take it anymore. After about 15 minutes, my hands became trembly (that only lasted a little while though), then I started having to go to the bathroom every 15-30 minutes for the next couple of hours and then the dizziness started and my face numbness got worse. I drove later that night and I just didn't feel 'right', and I've got to be able to drive my kids around. I told the Doc that and he assurred me that it wouldn't affect my driving---yeah, right. I don't think I can tolerate it enough to get through an 'adjustment' period.

What is involved in a neuro-psych eval? Do they just ask you questions and see how you respond? Nice to know it's not just in your head and now you have proof!!

In my case, the bb reduces my heart rate (previously 120-140 standing-down to around 90 now standing, 60ish while sitting), but doesn't help with my other symptoms. My cardiologist had told me when we found the right bb, that my symptoms would go away. But that hasn't been the case. I went through three different ones. Some made me worse. They don't seem to stay in your system long, so I think it wouldn't hurt you to try one and see if it helps. You will just be out some money (depending on insurance).

My friend's Sjogren's was diagnosed by blood tests. Her Crohn's was diagnosed by lip biopsy (by her dermatologist).

I have chest pain everyday also. I had a normal nuclear stress test, normal EKG, normal heart enzymes, my carotids were the clearest that the tech had ever seen. My cardiologist told me my heart is fine and to not worry about the chest pain. Still it is worrisome though. And, what if one day it is really something, and I think 'oh, it's just the dysautonomia' ?????

I have a good friend with Sjogren's and Crohn's. She got the Sjogren's diagnosis first and then started having terrible diarrhea which led to the Crohn's diagnosis. She mainly just takes immunosuppressants--prednisone and humira. Good luck to you. I hope you can find a tolerable treatment. I know my friend had a rough time finding medications that she could take that didn't make her feel worse.

My ears do this also. My ENT exam was normal too. I've never taken my BP when it happens, so not sure what it does in these instances. I just heard a viagra commercial on TV and it said if you get ringing in your ears to contact your physician, so I'm sure it's got something to do with blood flow, but I'm not sure exactly what.

This is my worse symptom. Feeling pressure in the front of my throat, up into my jaw and head, ringing in my ears. Doctors have no clue what's causing it. I've had all kinds of tests-brain MRI, thyroid ultrasound, abdominal CT, nuclear stress test, lab work, ear, nose and throat exam and everything's normal---but I don't feel normal (I bet we could all say that )

I have muscle twitching almost everyday-mostly eyelids. Also, some spasms in my lower back. I've done electrolyte panels and everything is normal (story of my dysautonomic life-lol). So, not sure what's causing it but it is very annoying.