Confused...

[Jeturner89]

I guess I'll start with my diagnoses first. I have POTS, an ASD, mitral valve prolapse, polycystic ovary, endometriosis, peripheral neuropathy, HORRIBLE circulation, ehlers danlos syndrome (classical), hyperreactive joints and anxiety (since I was younger). I am almost 23, female obviously, and just had my first baby at 22. I have had two surgeries that took place September and December 2009 (1: laparoscopy, hysteriscopy + dnc. 2: a tumor removed off of my coccyx as well as the last 2 vertebrae). After these I had horrible hemorrhaging, severe weight loss because of vommitting violently 20 minutes after every meal. My kidneys and intestines started shutting down/not moving. Lasics helped my kidneys but my intestines only started BARELY moving ( went a moth and a half with only 2 bowel movements). A year After I had my son, I started getting extreme pressure in my head feeling like my eyes would pop out, rushing sounds in my ears, vertigo, heavy and tight feeling chest, hard to breathe a lot, loss of appetite, feeling completely weak and collapsing, memory lapse, dazing spells, black/purple feet and hands always cold with tingling, constant numbness, pressure in my arteries in my arms like someone was holding in a bad spot, always tired, extreme confusion, clumsines, migraines (which I've never had), aching all the time, dizziness, more tachycardic than normal, blacking out, sharp pains in chest and stomach, passing out and hard time urinating sometimes whole other times I can't even feel when I have to urinate. My neurologist (which seems to not believe me) ordered an MRI, EEG and b12 testing. All apparently came out negative for anything. She was very rude (which I've shadowed plenty specialists and know some have their days, but telling me I'm absent minded and my geneticist doesn't know what she's talking about diagnosing me with EDS is extremely poor bedside manners). I have done things that aren't just "forgetfulness" that I can't remember doing minutes later and they are extremely important, one could have negatively.       affected my child. She told my pcp that she suspected MS but had told me everything was fine and thought it was in my head. I am pre-med and my pcp will back me up any day saying shell do whatever it takes to figure this out because every time I have felt "off" no one but my pcp was persistent in figuring out the cause. The results were always something rare or that needed treatment. I'm very worried my neurologist is just going to write me off like many others and I know stress has many similar debilitating symptoms but not all of mine. My pcp knows I'm not stressed or depressed and is treating my anxiety properly. I JUST can't and won't be Okay with raising my son knowing I could harm him. My husband won't even let me drive him anymore, and I understand why. I just need some insight, if possible. I do have very bad bruising, worse than before symptoms started, and I know manynof these sound like lupus (I have a step cousin with lupus) and I do have a 2nd cousin with Lou gherrigs disease as well. Please please please give me any type of insight possible. I know you can't possibly diagnose me, but some possibilities I can have in mind so I can approach my neurologist or pcp with ideas would be fantastic and helpful. I am a genetics fanatic and have tried to approach it through family history, turning up at a dead end. Thank you so much!

Jordan

[Red_Star]

Ehlers Danlos very commonly causes cranio instability in the neck leading to Arnold Chiari Malformation. Arnold Chiari Malformation is when the  cerebellum (lower part of the brain) herniates into the spinal canal. There is also Chiari 0 which means 0mm herniation however the cerebrospinal (CSF) flow is blocked causing Chiari symptoms.  A Cine MRI is a type of MRI that can show the flow of CSF.  

http://www.medhelp.org/forums/Chiari-Malformation/show/257

[Lulu54]

Jordan, you have a good PCP there so keep her close.  You need this kind of medical advocate on your side.  

Of course you are stressed and probably depressed - anyone would be when having all of these very real physical problems going on.  So don't let any doctor fob them off as something simple.  Even stress and depression have a true cuase and a treatment , but I'm not saying that is what is wrong in your case.

So much of what you write here absolutely does not fit the MS picture.  The very first paragraphs you are describing problems that are very different than something that happens in the central nervous system.  The things you felt after the birth of your son are more in line with neurological problems, but not necessarily MS.

You list many vascular and cardiovascular problems and I trust you have a good cardiologist checking all of these symptoms.

If I were you, I would go back to the PCP and ask for a referral to a different neurologist.  You need a set of objective eyes looking at your records as a new person.  The old neuro sounds as if the opinion is already set.

Bottom line - this is your body, you know something is wrong, and I hope you won't give up finding the answers to your problems.  You have to be the best advocate for yourself and not expect anyone else to care as much as you do.  

Good luck and I hope we will see you around - please come back and keep us up to date.

Lulu

[Lulu54]

Many here have vision problems and I have taken the liberty to break up your post into much more manageable sections.  Here are your words broken into something more friendly.
......................................................


I guess I'll start with my diagnoses first. I have POTS, an ASD, mitral valve prolapse, polycystic ovary, endometriosis, peripheral neuropathy, HORRIBLE circulation, ehlers danlos syndrome (classical), hyperreactive joints and anxiety (since I was younger).

I am almost 23, female obviously, and just had my first baby at 22. I have had two surgeries that took place September and December 2009 (1: laparoscopy, hysteriscopy + dnc. 2: a tumor removed off of my coccyx as well as the last 2 vertebrae).

After these I had horrible hemorrhaging, severe weight loss because of vommitting violently 20 minutes after every meal. My kidneys and intestines started shutting down/not moving. Lasics helped my kidneys but my intestines only started BARELY moving ( went a moth and a half with only 2 bowel movements).

A year After I had my son, I started getting extreme pressure in my head feeling like my eyes would pop out, rushing sounds in my ears, vertigo, heavy and tight feeling chest, hard to breathe a lot, loss of appetite, feeling completely weak and collapsing, memory lapse, dazing spells, black/purple feet and hands always cold with tingling, constant numbness, pressure in my arteries in my arms like someone was holding in a bad spot, always tired, extreme confusion, clumsines, migraines (which I've never had), aching all the time, dizziness, more tachycardic than normal, blacking out, sharp pains in chest and stomach, passing out and hard time urinating sometimes whole other times I can't even feel when I have to urinate.

My neurologist (which seems to not believe me) ordered an MRI, EEG and b12 testing. All apparently came out negative for anything. She was very rude (which I've shadowed plenty specialists and know some have their days, but telling me I'm absent minded and my geneticist doesn't know what she's talking about diagnosing me with EDS is extremely poor bedside manners). I have done things that aren't just "forgetfulness" that I can't remember doing minutes later and they are extremely important, one could have negatively. affected my child.

She told my pcp that she suspected MS but had told me everything was fine and thought it was in my head. I am pre-med and my pcp will back me up any day saying shell do whatever it takes to figure this out because every time I have felt "off" no one but my pcp was persistent in figuring out the cause. The results were always something rare or that needed treatment.

I'm very worried my neurologist is just going to write me off like many others and I know stress has many similar debilitating symptoms but not all of mine. My pcp knows I'm not stressed or depressed and is treating my anxiety properly.

I JUST can't and won't be Okay with raising my son knowing I could harm him. My husband won't even let me drive him anymore, and I understand why. I just need some insight, if possible.

I do have very bad bruising, worse than before symptoms started, and I know manynof these sound like lupus (I have a step cousin with lupus) and I do have a 2nd cousin with Lou gherrigs disease as well. Please please please give me any type of insight possible.

I know you can't possibly diagnose me, but some possibilities I can have in mind so I can approach my neurologist or pcp with ideas would be fantastic and helpful. I am a genetics fanatic and have tried to approach it through family history, turning up at a dead end. Thank you so much!

Jordan