Hello

[morgan617]

Hi all, I am still very shaky, so this will most likely be short.

First of all....THANK YOU ALL for your unending support!!!! It has meant the world to me.

I also want to say I have never shied away from psych problems. I have OCD, problems with depression and more recently some pretty major problems with anxiety, due to falling on my face and being unable to move or talk. My bp has gone high enough to hurt my vision.

I received the records from my first hospitalization. (Remember, I just went in for testing) I hated the psychiatrist because he said he doesn't make snap diagnoses' and then diagnosed me with conversion in about one second when he saw me in a paralysis.

Then the neuro said I have somatization and conversion, so I really felt like I had to believe it then. He said he diagnoses at least one person a week.

So, I felt I needed to face this on my own and lick my wounds and get over it with help from my therapist.

Well, my therapist says I do not fit the profile at all! And even if I did, people with conversion have no vital sign or lab changes, which is the hallmark of this psych disorder. She said the neuro should stick to neuro and let the psych's deal with psych stuff. She is appalled that this guy is diagnosing a minimum of 1 person a week, because it is an incredibly rare disorder. She says, think of all the sick people out there not trying to get anymore help when they are really sick. A full THIRD of conversion diagnoses are wrong!!!!

So back to my records. My pcp did notice my B12 was off, I did have some abnormal labs, my potassium was low the entire time I was in, even though I was getting supplements, my prolactin was very high, and the real kicker here is the psych note. The typed one stated I had anxiety issues, ocd, and yes, the dreaded childhood abuse, but I was not in the profile of a psychogenic illness. They did reccommend (spell checker) a urine tox for drugs for muncheuasen's. However, that came back clean, of course. BUT, in his written note from when he saw my paralysis, he said, this does have the appearance of a possible conversion disorder, HOWEVER, that would not explain the bp of 200/115 and pulse of 140, with diaphoresis (sweating) I am certain this is not a psychogenic component and must be followed up as it is very serious.

Sorry, this is long. So a psychiatrist is saying maybe a little conversion, but definately plenty of real serious medical problems and the neuro, based only on the fact I don't have seizures, says everything wrong with me is in my head. He even stated the reason the ablation didn't work was because my tachy was psychogenic, completely ignoring the fact that the ep doctor found abnormally firing tissue.

I haven't seen my primary since before the neuro gave me this diagnoses. So I do not know what he thinks. However he told me not to stop the K+. I have paralysis during the night. I wake up with it going on. I believe it's because I take my last K+ at dinner and so go a very long time between doses. I am getting very presyncopal. I will have to lie down for a long time after this post....

So, that is what is going on. I have missed you all, and again, your support is amazing. Welcome to all the new folks here.....upanddownmorgan

[Ernie]

HI Morgan,

Thanks for updating us.

I am glad that some doctors are finally finding some positive tests results. I am sure that within a few months they will figure out the paralysis attack also.

I know how hard it is when only a few people believe in you.

Love

Ernie

[Sophia3]

Morgan

Thank goodness you have a therapist that believes you.

I agree, being a 'non doctor', that to think one can FAKE such BP changes and chemistry in the body is amazing. I am glad your drug tests came back clean but I can imagine how ticked one would be to be checked for Munchausens!!! ???

And low potassium and B12 has never been on the list of 'mental disorders' that I have read!? I am glad you have SOMEBODY LISTENING to you who can make better judgements.

And I have NEVER heard of faking paralysis?? Well, except for soap operas. You have been thru the wringer lately. I can NOT imagine your frustration.

Hang tough, kiddo...I know you already do. But I hope you find an enlightened MD doc to HELP YOU.

Great to see your name here.

Take care,

Sophia

[dizzygirl]

hi morgan..

I am sending you lots of hugs!!

WOW!! you know it should not surprise me anymore about these darn docs.. but it does.. and I am very soorry for all they have put you through emotionally and mentally.. when they should have been infact looking into all those abnormal labs! that alone indicates a problem somewhere.. wouldnt ya think?

Not to mention the paralyse and everything else.. I hope morgan that you are able to find a dcotro to help you... take care..

and its good to see you back!!

Linda

[Dizzy Dame]

Hey Morgan!!! I'm glad you're back.

I'm also so sorry you're back to square one, but at least you're going to find out the REAL cause for your paralysis.

I hope you get an answer soon!

-lauren

[melly4]

Hi, Morgan. Glad you're back!! You've been missed and worried about. I,too, had a therapist who believed in me and thought that, though I had anxiety, my "panic attacks" were caused by some medical issue and that I did not fit the "profile" of an anxiety disorder. This man went to my church. He knew me.

I think it is a disgrace the way you were treated and so quickly diagnosed, or should I say "misdiagnosed". I mean, come on, munchausen's?!!! And, by the way, cardiac arrhythmias run rampant in my family, and my cousin has had two unsuccessful ablations, one at Duke. It wasn't because his atrial fib was psychogenic!! Have you ever been worked up for pheochromocytoma? Just wondered because of the BP and sweating. I apologize if you have posted that somewhere already.

I'm sorry you're feeling so poorly. Please rest, but let us know how you are when you are up to it.

Sending hugs and wishing better healthcare for you soon!!

Melly

[corina]

Hi Morgan,

I'm very glad to hear from you. You know how much we like to have you around. I really hope you will be able to hold on. We believe in you!!!

Love,

Corina

[DancingLight]

myweeniemom....

can i tell you how happy i was to see you post!!!!! to see your name pop up????

REALLY HAPPY!

what to say????? i am just glad that you have therapist with a CLUE...who could validate and confirm that the diagnosis was incorrect. but, i hate that it still leaves everything unanswered...

anyways, i gotta go eat some dinner...

but i just wanted to say hi...

love, emily

[michiganjan]

Morgan,

Welcome back! I have missed your posts.

I think the more you learn about what is going on with your body the more you are likely to get help for some of the symptoms. Just keep on unraviling the mystery.

Hugs to you--you have been through a lot.

Michigan Jan

[Eillyre]

MorganMuchMissed,

So glad to see you back on, even for a brief moment!

I'm happy to hear that your therapist sounds very supportive and is thinking this all through carefully! Take good care of yourself! Do keep us posted on how you're progressing when you're healthy enough.

Angela

[MightyMouse]

Morgan, you probably already know this, but elevated prolactin can be an indicator of a pituitary tumor, which can also cause severe blood pressure disturbance.

Hang in there and keep on keeping on girlfriend. The answer is out there somewhere. Nina

[MightyMouse]

Oh, and of course the obvious fact that potassium levels being off can cause seizures and severe cardiac arrythmias.

[Miriam Poorman-Knox]

Missed ya Lady.....A therapist told me tyhat we can have a conversion disorder that is due to the pots we are suffering with. This doesnt last forever. Makes sense. Lord knows that its amazing that we don't have more stuff. I am so thankful taht your husband posted for you. I talked to my son 3rd year med student at UW. He said that because you are in spokane that your lack of knowlwdgeable doctors is sad but not expected.!!!!!!!!!!!!!!!!!! I hope your getting stronger each day. PM me if you need anything. Miriam

[Aprilmarie52]

glad you are feeling good enough to post. Hope you continue to feel better.

[MomtoGiuliana]

Morgan

Thanks for letting us know how you are faring. It's good, I think, that you went through with seeing the psychologist, so she/he could refute the diagnosis of conversion, etc. It sounds like pieces of the puzzle are slowly coming together, since you have some abnormal tests to work with now. I'm just sorry it is so slow and you have to go through so much discomfort. Who wouldn't have psychological issues after being so ill for so long with no answer or relief? I know when I was very sick I had anxiety--some caused by POTS directly, some indirectly (anxiety about what was wrong with me). You are amazingly resilient.

Hope you have answers soon.

Katherine

[Radha]

hi morgan just wanted to add that i was thinking of you and hope you get some answers soon, but even if you dont, dont ever doubt yourself, i know how painful it is when people label you and you dont feel validated, but this is the time to believe in yourself and that you know your body the best,

radha

[briarrose]

Morgan

I'm so glad that you're back home with us

My recommendation based on everything you've written on this post, please seek a doctor's appointment with one of the leading Dysautonomia guys. Preferably Dr. Grubb but if you can't get in then there is Dr. Low, Dr. Robertson or Dr. Goldstein. The four top names! Although I think that you might have to make it in for a research study for some of the others because they don't just see patients I'm saying this because they will be able to make heads or tails out of all your tests. It's funny but I think that many doctor's order tests that and they are unable to decipher the results to explain symptoms. I think that you'll need to see one of the leading specialists to help!

There's my 2 cents

Anyway so glad to see you posting.

Steph

[hopeful-girl]

Hello Moragan. I am fairly new here and i just wanted to say Hi and I am SO happy you have a great councelor. I have learned that it make sa huge diefference when you have some one who has faith and believes in you. You are in my thoughts and prayers.

Corina (hopeful-girl)

[Guest Finrussak]

Hi Morgan

I am SO relieved to see you back. I felt that I didnt know you well enough to encourage looking further so I cautiously watched and waited and worried and prayed!!!

My husband a few yrs back was in the exact same position as yours...wishing for an easy answer and fix...wanting his wife well-he took me to 3 psychs wanting to hear how therapy and meds will make it all go away...but each time the treatment failed months lost, and the sx were worse until finally a few cardiologists suggested dysautonomias and the quest began which ended with Dr Grubb confirming all suspicions!!!

I am SO relieved and hope you will get to one of the named specialists!!! this way youll KNOW if it is a dysautonomia. Plus the med centers where these docs are can also r/o the pheo- etc.

Id like to also add that the erratic results can also be do to "pseudopheo" which mimics exactly the tumor/adrenal stuff others mentioned here.AND my BP zooms very high as well and so far NO tumor or pheo or pseudo pheo can be found!!! so it CAN still be the dysauto stuff!!!

And to clarify the whole conversion disorder discussion you absolutely CANNOT have "conversion disorder due to POTS" or DUE to anything medical. The definition of conversion disorder according to psych diagnostic guidelines is :Sudden onset of symptoms, due to stress or trauma, that CANNOT BE EXPLAINED BY:KNOWN MEDICAL CONDITION, ILLNESS, PATHOLOGY (I.E. TUMOR), OR SUBSTANCES (DRUGS). It is very often misdiagnosed as the guidelines warn that 1-2 short exams cannot diagnose this and every medical condition related to the symptoms must be ruled out. Well, your abnormal bloods dispute this. And since youve never been worked up for dysautonomias, this also disputes the dx. Its also known as "hysteria" such as "hysterical blindness, hysterical pregnancy etc"...and part of a class of psych conditons known as "somatoform disorders" These are : conversion disorder, hypochondria, somatization pain disorder and Somatization. The last ( also often pinned on us)must include long complicated medical history, psychological distress and/or interpersonal probs, CIRCUMSTANTIAL medical results, vague INCONSISTENT sx, and NO NON-PSYCH CONDITION THAT EXPLAINS THE SX!!!! again the warning that all psych drs rule out all medical conditions/illnesses. This definition alone shows how many of us are misdx!

also discussed in the textbook is that conversion is often confused with other psych disorders like General Anxiety Disorder and somatization.

Obviously "we" fit into many of the associated lists of sx-which explains the snap dx we get -BUT since we all have faced and continue to face the biases of many Drs we all need this info to be armed. This way WE can understand what truly is physiological and when/if we need psych support!!!

as far as the prolactin...as a developmental biologist I can unequivocably say that the anterior pituitary DOES secrete this and a benign tumor can be the culprit BUT Im assuming youve had MRI or CAT of the brain which wouldve shown this!!! However,heres the list of other causes of incr prolactin:

stress

hypothalamus disease (again MRI shows it)

hypothyroid

kidney disease

polycystic ovaries

shingles

chest wall irritation/inflammation which stimulates breast tissue

the Pill (estrogen)

meds-antidepressants, H2 blockers (like pepcid) , opiates and other

pain killers

being less than 6 months from weaning of breastfeeding infant

Prolactin is controlled by DOPAMINE ( inhibits) and SERATONIN (releases it)

as you can see with dysautonomias affecting dopamine, seratonin etc that can in itself cause the abnormal hi or low levels.

a good endocrinologist can r/o much of the above.

Keep hangin in...and try to get to one of the centers mentioned above (Mayo, Hopkins, Vanderbilt, Med College Ohio) or one in california??

Finette

(ps I had missed your posts...I often look for them for the quick smile I often need!!!- thanks)

[Miriam Poorman-Knox]

I respectfully disagre re: conversion disorder. Being a bilogist doesn't necesarrily mean that by defiition you can diagnose. When this happpens there are other things taken into consideration. One must try to understand and ask questions--All family and loved ones. I do know of people with dysautoniomias who have had conversion disorders. It is very hard at times to deal with all the unknowns going on in your body. Morgan you are a nurse you are an intelligent lady. I am happy you able to keep in touch......Miriam

[Guest Finrussak]

Miriam

I am NOT diagnosing...simply quoting TWO respected guidelines for dx written for psychiatrists. IF anyone has "conversion" with another illness then they have ADDITIONAL sx and the conversion sx are NOT the ones caused by that illness. I have also phoned 2 psychologists...one a neighbor and one my own therapist---to make sure I wasnt reading the medical texts incorrectly.I wasnt.. I never implied you cant have conversion with other sx WITH dysauto...just that by definition ( you may read for yourself the DSM and various texts) to be "conversion", the sx experienced/attributed to the conversion dx cannot be due to a medical reason!!!

I didnt say anyone with dysauto couldnt have conversion, I said that sx that can be directly attributed to a medical condition cannot be "conversion"...of course if the stress of having a serious medical condition causes a psychogenic disturbance then other sx will arise and THESE NEW SX may indeed be able to be classified as conversion IF and ONLY if theyre not attributable to a medical conditon. .

and I mentioned my training only to reassure Morgan that the High prolactin can be a result of many things, as this is a hormone that I am familiar with!!!

Unfortunately, when diagnosing, many things arent taken into consideration as they should be, so I absolutely agree that questions should be asked, and part of understanding is basic definitions so that labels are correct and meaningful.

I am sorry if you misinterpreted my post to mean the 2 things cant happen at one time

[morgan617]

OOPS, it's okay guys. My problem with being diagnosed with any disorder, is when it's diagnosed by someone who does not work in that field.

For instance, an endocrinologist I saw said I couldn't possibly have meneires as it burns itself out. ( In fact, it tends to get progressively worse. ) When I told my ENT what this doctor had said, his response was, I will not delve into endocrinology and he can stay out of my specialty!!!!! I have never in 10 years seen this doctor angry, but angry he was.

If a legit therapist believes I have conversion secondary to something or another, after ALL physical options are exhausted, then I will accept it. But even the psychiatrist who thought I might have it, clearly stated it did not jive with the physical things happening to me. Therefore after a psych can't explain it, I'm not sure that just because I don't have seizures, the neuro can definitively state everything wrong with me is emotional, or psychogenic. All he can do is rule out seizures, because that's all he did. I totally believe I do not have seizures, because he is an expert at that. But periodic paralysis, pots, and endocrinology are not in his areas of expertise, therefore, I am very skeptical.

After reading that 30% of people are misdiagnosed with this disorder, I deferred to my therapist of 15 years. Trust me, if anyone knows me, she does.. and she emphatically states I do not fit the picture of conversion. The very fact that I went straight to her to get it fixed, she says, speaks volumes as to whether it is a legit diagnoses. And she stated, he can do all the neuro stuff on you he wants, but it is MY job to help you figure out your psyche.

Are you guys getting my point here? I don't believe as many of us can be as ill as we are and NOT have psych disorders. It would be more abnormal not to have any, than to have a few. If I do in fact have conversion, documented and verified by my THERAPIST, then I will be sad, but I will accept. I already accept OCD, depression, and a little anxiety just to spice things up. So what's one more.

I think it is very important that we investigate, ask, and see the people we need to see. I also think we need to accept certain things, even if it doesn't feel good. But I also think we need a little dose of skepticism when we are getting diagnoses that are not in that persons area. I was willing to accept it, because he said if I did they would go away. So I cried and accepted it and felt awful about it, and guess what, they are not gone. And my therapist says it's because it's not psychogenic.

I came in here to shut down for the night. good grief, on a chatty cathy roll. My nickname isn't motormouth for no reason

I think this disease is too complex to figure out. What starts it, why we get it, what it affects (everything) how to cope, new symptoms all the time. We do look like crazies, because everything is wrong with us. Almost all physical, with a dabble of psych. That's my story and I'm stickin to it. conversionsmersion, dizzytizzy,acheybreakey,noluckyuck,not feelinhotmylot.....makeupandkissmorgan

[Evie]

Hi morgan im glad your pychciatrist is good! its so much easier do deal with when they believe you and are supportive... I hope you get some answers from drs now that you have a pysc report saying its NOT in your mind. (although I do hear that CBT helps you deal with bodyily symptoms even if they are not caused in your mind so if you do have to go to further psyc appointments i hope they can help your mind help your body .. even if its not caused by your mind? if that makes any sense at all heheh)

This must be so tough for you... thinking you of you and wishing you all the best in the world!

[Miriam Poorman-Knox]

as usual Morgan you are the woman. I know that your training has in the past and will in the future help you ultimately. How are you????? I am so glad that you are able to respond more. For some reason--need a bipsy to be sure my B12 is needing t be increased. I just get monthly shots, no need to biopsy me. Take care. Hope your sons are doing O.K. Miriam

[Laura]

Hi Morgan,

I was wondering if your therapist is in contact with your PCP? It would probably be good to have your therapist, who has been working with you for so long, to send a letter or note to your PCP and just let him know that she is not on board with the conversion disorder "diagnosis". It would be really helpful to have that included in your medical file so that you have a documented secondary opinion from someone who has been working with you for a long time. Just a thought.... Laura