Realy need help with this

[j105]

I am 33 years old and a couple of years ago came down with being tired all the time. Went to family dr and they sent me for MRI blood work and everything was normal so sent me to sleep specialist . I had sleep study and confirmed I was very tired and said I had Hyperinsomulance?? not sure of spelling but its kinda like Narcolapsy... but a year into this my blood pressure has been low so dr said before taking meds to see why it was 90/60. I have these dizzy spells since October 2010 which I almost faint and Dr sent me to Cardiologist who confirmed I have Mitral Valve Prolapse, Murmer and Pulmonary Valve regurgitation, The Dysautonomia name came up at Feb appointment with dr when I told him about dizziness. He said Orthstatic Hypotention from the Dysautonomia. My blood pressure has fallen to as low as 67/53.  Last week I had a dizzyspell that was followed by shaking of my entire body for a min I just need to know if anyone else has this or can help with what exactly is happening to my body. My neighbor saw the shaking episode and said I needed to go to ER but I did not as I have had some shaking but never that long and she said my eyes looked glazed over when it was happening.  Please help.

[j105]

Saw nero dr today and he is going to do another MRi this time of neck and spinal area  test on Fri .  Which I guess was not done as he only had the MRI of Brain and MRA he said it was normal except for a small bulge on a artery ? but thinks that is not causing symptoms.  When he was going in office nero test he noticed my eye lids were twiching and saw some tremor movements in my jaw area again on that left side. He asked me if i had tics or tremors before which I have not so he said he is puzzled why that would be there but he said in rare instances neck problems can cause facial weakness.usually not tremors and eye lid twiching . He said if this MRI shows normal he wants to not rule out doing a EMG test on nerves in face.  I know my body and what ever is causing these bursts of pressure is causing this stuff to happen. They just need to figure out sooner than later.  Still Praying for solution to this I may have to get another dr's opinion if this continues much longer  or gets worse.  

[tkimber]

I was reading all of your symptoms.  It's incredible how similar our symptoms are.  If I to this day look down at my feet, I will either get a severe dizzy spell or start to faint.  They were sure I also had Chiari and you are right, it is so hard to spot it.  I saw a show on a girl who they were convinced she didn't have it, they had to do surgery to find it.  It was on mystery diagnoisis.  I did not have Chiari, but did find a doc here in Vegas who wants to do a strange type of MRI...and have me place my head differently than other MRI's.  I was diagnosed at Mayo with Autonomic Neuropathy with orthostatic hypotension and something called crisis.  But what I found interesting with your blood work is that I too was told that I had high Epstein Barr count.  I don't even remember ever having Mono.  I guess this can happen to people who had mono and it can come back in this form.  I didn't really understand it.  But that's interesting. I did have a serious lung fungal infection a few years ago which made my neuro problems worse, but I always had issues as a child, this just sent it into a frenzy. The docs at mayo did say that the nerves coming out of the base of my skull were really swollen and recommended cortisone shots.  I did that years ago and it didn't do anything but make me dizzy.  But I still have lots of pressure at the base of my skull that just brings on terrible headaches and dizziness, sometimes nausea and blacking out.  If I use the upper muscles (my arms or back too much) or play sports, it makes it even worse.  Even putting ornaments on the christmas tree causes a serious flare up.  Waiting to go back to Mayo.  I hope you get some answers soon.   To give you some hope, I'm better than I was two years ago.  That was bad.  But am still hoping for some more health to come my way.  I still have many issues, but mine was being worsened by a fungal infection like I said, and also a toxic thyroid that had a tiny bit of cancer with it.  Once we got that fixed, I did start to feel like I was going to make it.  So hopefully they find something easy to fix! God Bless you. Feel better soon and keep us updated.  I'm really curious what they can find and do for you.

[j105]

going back to see nerologist this afternoon hopefully he can help. I think maybe the neck thing could be causing the back  numbness . So hopefully he will be able to tell what is going on. I am miserable with this and need answers and thats what i am going to tell him today.

[LivingInHope]

Hope you got more help this time?

[j105]

Well got no where with old family  Dr last night told me after I got back to room sounds to complex has no recent records and have to reschedule with another dr ...and they would not even look at my neck or tell me why back is numb. I told them I feel worse and they said to reschedule.  I even told them it feels like my body is shutting down each day. Tried to spend some time outside yesterday with my daughter but the being outside in the bright light was making me sick and head felt real full of pressure. Going to try again today this is just making me miserable.  

[LivingInHope]

Wow, sounds just awful- did you see your family dr. today I hope?  

Have they've ruled out spinal meningitis & encephalitis?

It really sounds like you belong in a hospital to me.

I hope you can get an MRA/MRV re:the small blood vessel bulge- wonder if it is a small aneurysm?