******This is general info:

My name is Jessie. I'm a 21 year old American female of Western/Northern European descent who's getting ready to start what should be her senior year in college (few bumps along the road).

I have a history of psychiatric disorders. I've been diagnosed Bipolar II, Generalized Anxiety Disorder, ADHD, probable Borderline Personality Disorder though PD NOS, recurrent intermittent panic attacks, and [currently questioning] Conversion Disorder, a psychogenic neurological disorder.

I'm on five medications: 150mg Welbutrin, 1mg Klonopin, 15mg Adderall, 200mg Lamictal, and 50mg Topamax.

Physically, I have PCOS and iron deficiency anemia related to the PCOS. Mild plaque psoriasis. Tachycardia, but that might be related to my current situation that doesn't look so much like Conversion Disorder anymore.

I add this info because it might be relevant. Might not be. Just for safety.

******Here's the important part:

I was diagnosed with Conversion Disorder in November 2015. I ended up with right side weakness, a drop in the right leg, a severe stutter (with no prior history of stuttering), tremors (though particularly severe in the right hand), cognitive dysfunction. MRI/CT/Chest X-Ray all came out clean. Went away in about five days. Probably triggered by identified stressor.

Second episode started on 06/23/16, the day I took the first dose of the propranonol (taken off after the second dose). The same symptoms came first. Gradually, new symptoms appeared: the stutter is exponentially worse, extreme weakness in the right arm, feeling like things are crawling on my legs, random pin-like sensations on different parts of my body and it doesn't take much to make limbs/extremities "fall asleep", bottoms of my feet fall asleep for fun.

Worsening of the symptoms with heat exposure, extreme weakness/moderate pain in back muscles, "on-off" neurological phenomena (stutter when I speak, but I can sing a song that I know clearly. If I sit up straight to maintain posture, my whole torso shakes like hell and my head bobs but the tremors in my hands stop).

Loss of biological survival signal that says "eat or you're going to die" and just generally not noticing "hey, you need to drink something; you're dehydrated"--had to set reminders and post notes to remind myself, dizziness, my right foot is starting to turn inward when I walk, random, intermittent muscle twitching (particularly in the right hand and arm), disturbed equilibrium, fatigue (might be PCOS related though; iron was a tad low last time it was checked). Might have passed out once. Not sure.

I'm "losing" time, if that makes sense? Like there are blank spots in my memory when I try to look back on what I did-- sometimes an hour ago, sometimes the day before. It's just like someone ripping the page out of a book and the reader being like "wtf happened here?"

I think the tachycardia might be related to the astronomical oxygen expenditure related to my body being overworked for no reason and the involuntary movements.

This episode is much, much worse than the last; it seems to partially remit, then relapse. The stutter will let up some, but then come back and curb stomp the speech center of my brain (can't remember what that is right now... and I'm a psych major). The headaches will ease up, but then BOOM. Knife in the skull again. The tremors will lessen and my right arm cooperates more, and suddenly, I have trouble twisting the cap off of the freaking mayo jar again. My GI tract is slowing down, I'm still having trouble eating, I'm still pretty dehydrated because I just... can't remember to drink despite the reminders I have, the drinks set beside me...

I've been in the ER twice in the last three weeks. The second CT was clean again, but will the MRI still come up clean? I don't know. I'm not sure. I don't know what the hell is going on.

Today is July 12th, almost three weeks later, and nothing is improving. Almost nothing has been done to help. I see the neurologist July 19th. By that time, it will be two days shy of a month. I have been unable to work, have had to ask for help in grocery shopping, have had to let me mom help me pay for far more than she should be...

If I didn't have a psych history... I feel like this would have been important. I'm only 21 with no personal or family history or neurological disorders (other than my paternal great-grandfather dying of a brain aneurysm). I only got slapped with a CD diagnosis because I have a psych history and clean CT/MRI of the head. That list of meds and disorders got me thrown into the "psych patient" box and duct taped in. This one doesn't know that I have a box cutter in my back pocket this time.

The main reason I came to this thread to ask for help is because my parents, an ER and ICU nurse, each with 22 years experience, are concerned. They asked docs they know, and they're worried about MS specifically. They're not neurologists by any means.

Those of you diagnosed, though... If you could share your thoughts, your experiences, any information, tips for the neuro visit, I would appreciate it. My parents would too. Kind of grasping at straws, hoping someone will hand us one, even if it's short or broken, made off cracked glass.

Thank you for even taking the time to read this... and I apologize if it's a bit jumbled. Kind of mirrors my cognitive processes right now. Doesn't help that my sleep is jacked on top of it.

Hi Jessie (PatternsInTheIvy),

You've expressed yourself very well, I think.

The first thing any doctor will want to know is what meds you're taking, and you've listed them along with their dosages. You probably know that you should take that list with you to the doctor's appointment.

But have you checked all of those medicines to see what their possible side effects/adverse reactions are? Some of your symptoms just might be related to the meds you're taking.

I hope that you will see the neuro soon. Your neurological symptoms sound severe. Some of them occur with MS, but then there are many symptoms that crop up with MS. The symptoms can also be part of some other problem.

Of course you have to let the doctor know about whatever meds you're taking but otherwise you might not want to mention any of the psychiatric difficulties unless you're specifically asked. If you can differentiate between the conversion disorder symptoms and physiologically caused symptoms, you should emphasize the physiological ones and skip the others.

I understand your post to mean that you'd like to be taken more seriously in terms of your medical (physical) problems instead of being categorized as a psychiatric case and given psychiatric drugs.

This is understandable, for people who have psychiatric disorders can ALSO have medical problems that need to be treated for what they are.

I hope you'll find some answers soon.

Agate,

I've done pretty extensive research on the medications I'm taking, even prior to this issue. Checked interactions, noted side effects, etc. I always do. I'm a psych major, so I have a decent understanding of neurotransmitters. I know which neurotransmitters they act on, focused specifically on dopamine given the occurrence of a dopamine-related Parkinsonian syndrome (low levels of dopamine in the brain). That, however, seems unlikely given I'm on two medications that increase dopamine levels in the brain and one that for certain decreases them in the brain; there is another that may have a slight antagonistic effect, but I haven't found any clear evidence of that. I've been mostly stable on all five of these meds for at least three months, Adderall being the newest. The other four, from April, and the previous three, from September. I tolerated all of them well, but that is something that has to be kept in mind because my brain chemistry is a finicky little beast. Hence having to be on two mood stabilizers (Topamax and Lamictal, with Topamax being an atypical mood stabilizer).

The reason I mention the first "episode" symptoms is because those were the first onset, and also the first onset last month. It just continued to progress from there. I've addressed several potential psychological triggers, including one that has been the biggest and most troublesome through my lifetime, none of which have done anything to improve the symptoms. With CD, that typically rapidly improves symptoms.

Also with CD, you tend not to have psychiatric difficulties (from what I understand given the research I've done) because the disorder is psychogenic and is rooted from psychological distress. The psyche essentially says "No, I'm done; this one's on you, CNS/PNS" and pushes the stress to the nervous system. I'm no professional of course, and I don't claim to be one, but I do a lot of research. I read a lot of academic journals/research papers and write down anything pertinent. I want to make sure this doc doesn't brush me off. One of the ER docs called an MRI and a CT a "full neurological work up". I was too disoriented at the time to really fight it.

Unfortunately, the neurologist is in the same physician network that my primary and psychiatrist (a PA and NP) are, so he'll have access to that as soon as I sign the medical release anyway. Hell, he may be able to see it regardless. And with the medication I'm on, particularly with the Lamictal (anti-epileptic) and Topamax (migraine med), despite lacking a history of neurological disorders, he'll know something's up.

My mother insists on going with me this time. She's the "box cutter in the back pocket", because she's as fed up with this as I am. Don't mess with mama bear, especially when mama bear has been an ER nurse for 22 years.

Thank you so much for your response. I'm more grateful than you know.

Thanks for explaining--especially about the "boxcutter." I didn't quite understand that part of your earlier post!

I hope your mother will be helpful. Sometimes people feel more comfortable having someone with them, even if it's only so the other person might pick up some information that might have been missed.

Maybe you hear the doctor say one thing but your mother hears it a slightly different way. You can compare notes and see if one of you hasn't understood right.

It's hard to call a doctor after an appointment and say, "Excuse me but is this what you said?"

The doctor probably will have access to the psychiatric history. Some doctors don't even glance at previous records and prefer to form their own ideas based on their observations.

I hope that this one will turn out to be one of those. Or at least intelligent enough to realize that their colleagues can be wrong. Or to realize that you can have these psychiatric problems but also have an organic disorder.

hi jessie & welcome to NT,

i agree with agate. she brings up some good points.
i think it's always good to bring someone with you to dr appts for a 2nd set of ears. since you have many symptoms conditions having someone as experienced as your mom to advocate WITH you can be very helpful.

it may be harder to gain the respect/help of your drs because of your psychiatric conditions. just the nature of the beast imho. i would write down your Q's. i do all the time. my drs actually appreciate it & have come to expect it at the end of my appt. i write down their answers.

i really hope your appt goes well. i have a good pcp that takes me seriously & can also advocate for me. i hope you do too. if you havn't already start a medical file on yourself. like copies of dr visit notes & copies of cd's from CT scans etc. it will help if you see other drs to have these records.

i have learned a lot from reading my dr's notes. and, i've found errors that sometimes i've made them change in my files. no sense in muddying the waters with inaccurate into.

anyway, i've rambled enuf. please let us know how you are. you sound like a smart, educated, strong young woman. i'm sorry you're dealing with so much.

judy

Hi Jessie! Welcome to NT!

You certainly have a lot going on right now. There are many things that can cause your symptoms and, unfortunately, it may take some time to sort it all out. Keep track of your symptoms so that you can present it to the neurologist. Write down when the symptom started, stopped, the intensity, what you were doing when the symptom started, was there anything you did to make the symptom go away, etc. This will be helpful in identifying any trends, if there are any.

Also, has your OB/Gyn done any testing in regards to hormones? Since you have PCOS, testing all hormone levels, not just FSH or estrogren, may be helpful. I think it's androgen that causes mood related symptoms in PCOS, but I can't remember. I also just read an article about PCOS and anemia and the crazy symptoms they can cause. I don't remember where I read that so I can't post the link.

Have you been to an endocrinologist? I'm not saying what you have going on is related to that but there may be a metabolic/hormonal component to the what you are experiencing. Any testing they do can help rule out (or in) MS.

Have you had your B12 tested? A low or high could cause some of the symptoms you are having including the short term memory loss, fatigue, and depression. If you have not had it done, you may want to get it checked.

Those are just some of the things I thought of when I was reading through your post. I am glad your mom will be going with you to be your advocate. I think having an advocate at appointments can be really helpful. Even having someone there to take notes and such is a good idea.

Did you get an MRI of your brain and spine?

Please let us know how you are doing, if you have any more questions or concerns, and how your appointment goes. Hang in there! The answer to your symptoms is there, it just needs to be discovered.

When you see your doctor, make sure you get bicarbonate testing... Topamax causes a metabolic acidosis in about 30% of patients which can occur anytime during therapy. Acidosis leads to tingling and other sensations, fatigue, and confusion. Patients on this drug should have periodic blood testing of bicarbonate levels.

Letters were sent to doctors several years ago about this but I don't think many heeded the warnings.

Here is the letter:
http://www.fda.gov/downloads/Drugs/G.../ucm054728.pdf

Thank you all so much for your advice! I've written all of the information/testing/potential causes down along with the information research I've done myself. ...Need to reorganize that for sure and sort it out properly, along with the list of symptoms and information. Again, thank you! the information has been very helpful and is hopefully going to be something the neurologist will take into consideration when I see him next week.

Tkrik: I've had two CTs and an MRI of the head done. The MRI was done back in November. No MRI of the spine, no EEGs, no EMGs or anything of that sort either. I'll have to see whether the neuro wants to look at medication/hormone and neurotransmitter levels first or check for physical abnormalities.

Thank you all again!

Hi Jessie

Just something to add to your search for answers: Have you considered the possibility of a genetic disposition contributing to the cause of your conditions?

Here's a link to an abstract of a meta-analysis review of case-control studies of two MTHFR polymorphisms and major psychiatric disorders.

Meta-analysis of MTHFR gene variants in schizophrenia, bipolar disorder and unipolar depressive disorder: evidence for a common genetic vulnerability? - PubMed - NCBI

If you look to the right side of the web page there's a list of similar articles which may be worth researching.

I don't know how easy it is to get genetic testing within the medical (insurance) system in the US (or if you have to pay privately). But getting it done, and if the results indicate a susceptibility, and you have associated studies, this may help your neuro (if you get a receptive one) to better plan your treatment. A lot of 'ifs' I know - but with the help of your medically trained parents and your own studies I hope you can find a way through this complicated medical maze.

All the best

bluesfan,

Actually, I was aware of the genetic predisposition to schizophrenia and bipolar disorder.
We covered the diathesis-stress model, explaining the necessity for both genetic predisposition and environmental trigger, relating specifically to schizophrenia in that instance, but it was assumed chromosomal rather than a mutation. I've always heard it described as the two essentially "being on the same chromosome", but having taken a look at the article already, this would explain that too, given SZ/BP (regardless of what subtype) are connected. Adds on the unipolar depression, which is also logical.

On my mother's side, my great-grandfather was schizophrenic, my grandmother was schizoaffective (mood disorder+schizophrenia), my mother is unipolar depressive though suspected BPII, and I'm diagnosed BPII. I'll need to re-read it a few times, take note of the specific mutations and at which base pairs they occur that have a stronger correlation with psychiatric disorders. It was noted that some had no correlation while others suggested the mutation was a potential cause.

Thank you. This is interesting. Very very interesting.