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.

[ktmom]

An EEG can be normal and you may still be having seizures. my son has had seizures for several years and just now his EEG came out positive. He had two that were negative but he was clearly having seizures.  It just makes me so angry when dr.'s don't know the answers and rather than admitting they don't know they say 'conversion disorder' or you are just 'stressed.'  I would suggest reading this book "My imaginary illness' it is about a young woman who was very ill and doc's kept saying she had a conversion disorder-turned out she had a rare form of an autoimmune disease called 'myasthesia gravis.'  Also you can have seizures from Dystanomia-I know of another person who has them.  I am sorry you are going through this. I have had doc's say some off the wall things to me because they did not know what i had for a long time.

[j105]

Dr said normal EEG actually went to sleep during it according to him.  He said at this point he is calling it a possible conversion disorder till down the line with symptoms. He has ruled out everything major he said so I looks like I am getting a second opinion as the only thing that is causing me stress is what is happening to me.  Which no one can figure out.  Next time  dizzyness/shaking happens in front of person who wants to call emergency I am letting them as this is getting ridiculous not being able to tell what this is.

[j105]

Still no answers called dr office Monday and today and they have yet to call me back. I the mean time Saturday episode of shaking while handing neighbor garbage can lid started jaw shaking had rush to garage to avoid questions about whats going.  

[ktmom]

Hi, this does sound like a seizure to me-usually these will set off migraines.  I was just diagnosed with POTS and CFIDS and have severe migraines.  My son has epilepsy and I have been doing research-from what I have read and heard from others in severe cases of dystanomia you can have seizures.  Just so you know even if you EEG is negative, you still may have had a seizure.  My son's were negative at first and he has seizures all the time. Only after he had a very long one (over five minutes) did they show on an EEG.  Dystanomia is also related to autoimmune diseases. I would have them check an ANA-ASAP. You can have central nervous system involvement with vasculitis and Lupus.  My doctor also is planning on giving me a spinal tap because my bloodwork showed neuro imflammation and because of my headaches.  I wish you luck-this is a very complex disease. Please let us know what happens

[LivingInHope]

I think sometimes techs may not always offer accurate timing of turn around time on results.  Interested to find out if it showed anything!  Was the scoliosis characterized as mild, moderate or severe?

[j105]

Yes DR said the MRI was of cervical spine. Scoliosis is in cervical spine.  Called today and they said give them a few more days for the EEG results and try back Monday. Tech that did the EEG said results should be done next day so not sure on how to take that . Hopefully something will show up on that as I did have a few min of shaking in Drs office while hooked up to EEG monitor. Jaw bounced around fast. So maybe they are still trying to tell what that was I am not sure but will post results.