In 1969, the band Chicago released the above titled song on its album "Chicago Transit Authority".
The opening lyrics of this song are:
" Can this feeling that we have together
Ooh, Suddenly exist between
Did this meeting of our minds together
Ooh, Happen just today, somewhere..."
This morning I share a quote from an article in the current online edition of "Psychiatric Times."
The article, "Neuroanatomy and the 21st Century Psychiatrist" dated March 21, 2017 by Barbara Schildkrout, MD.
Quote:
"Thinking about the difficulties a patient might have (with verbal communication or in other domains of behavior) in the context of a neuroanatomical scaffolding would be an important theoretical shift for psychiatry."
End quote.
Disclosures:
Barbara is Assistant Professor of Psychiatry, Part-time, Harvard Medical School, Beth Israel Deaconess Medical Center, Boston, MA.
She is the author of two books, Unmasking Psychological Symptoms: "How Therapists Can Learn to Recognize the Psychological Presentation of Medical Disorders"; and, "Masquerading Symptoms: Uncovering Physical Illnesses That Present as Psychological Problems."
Congratulations to all of you. You earned your medical degrees by virtue of understanding of your own disease.
Psychiatry is inching towards the idea that you have a brain and a nervous system and that those two things matter.
Follow up quotation from Psychiatric Times article.
In the same article on "Neuroanatomy..." Dr. Barbara Schildkrout went on to state:
Begin quote:
"Neuroanatomy provides an underlying matrix by which to organize our psychiatric observations and theories within a scientific based framework."
End quote.
Folks, this is what you have been saying all along. There has to be science that underlies diagnosis.
Until all branches of medicine learn, understand and put into practice the true fundamentals of neuroanatomy, there is no scientific basis for the diagnosis we have been given.
It is only conjecture at this point as the mechanics of neuro anatomy are still in their infancy.
There are no words yet to appropriately describe this disease. We can use interim names like FND but there is no basis to rely on for drawing conclusions about the disease and what to do with it.
Keep fighting for diagnosis codes in your charts that accurately reflect reality and give you to widest leeway in getting further diagnostics and disability support.
This disease is disabling. Beyond that, whether it represents communication dysfunction between brain and body or whether it involves so much more, as I suspect, remains to be determined.
Keep your suspicions high and your assumptions low.
Dan / Seattle
• in reply to
Hey Dan, hope your bit better now, the fight is just not to get a diagnosis, that can take year or more to even get to a nuerologist that will diagnose FND instead of something they think you have instead and are not really interested. Then the next fight is to see either professor Edwards or professor stone or if there are anymore nuerologists out there who can diagnose FND, then the next fight is to get help with dealing with this awful illness, as you say it's an unending fight, at times going nowhere, not great here recently, love to you and yours, ps I go back to London hospital for physchaiatry on the 20th this month, then I have to wait and go to different London hospital to see phychaiatry again, I have to wait and attend both appointments or I'll be dropped and have to start again. It's all professor Edwards could get for me this year as although professor Edwards said only help that would help me is as an in patient, the waiting lists are extremely long and he is struggling to get me to see the right people to even get me on the list. Just wish I could sleep one night, I know I would feel better, but it's not happening. 🤗🤗🤗🤗🤗🤗🤗🤗🤗
• in reply to
God Bless you Lisa-anne.
You have the biggest heart and so much courage. I remain a big supporter of yours because you are experiencing the worst of conditions.
I really hope you can be seen by the right professionals in a reasonable time frame and get some relief.
Sleep is essential. Please keep telling your doctors that you can not get good sleep. There has to be some way they can help with that.
This morning, my daughter Andrea woke up covered head to toe in urticaria (hives). We assume it is an immune system attack and are treating it with antihistamine. It is just another entry into the record books of having an unknown disease diagnosis. We are being very watchful of her today.
Thank you for checking on me. I see doc tomorrow.
Take care. Sending our love to you and Trevor.
Dan / Seattle
• in reply to
Hi Dan, I've been given every drug known to help sleep, none of them worked and the side effects were awful, wouldn't have minded side effects if they just helped me to sleep, even drugs not normally tried for sleep I've tried but to no avail. See another dr last week who took the time to read what I've had and consulted his book of different medication and said apart from putting me out there is nothing left to try. He thinks I sleep for 2 hours then become pain and wake all through the night. Your poor daughter must be suffering my daughter got hives through touching raw salmon when working in a restaurant, we didn't know she was allergic to it, it looked like she had fell and rolled in stinging nettles, I hope she recovers quickly. Love to you all. ☺️😊🤗🤗
• in reply to
Lisa-anne.
I hope daughter recovered. Mine sacked out on sofa now. At least I can keep watch. Blood pressure just crashed. I no use now. Will wrack brain on sleep problem. Gotta be something to override pain cycle.
Dan
• in reply to
Your so great thinking of others with so much on your own plate, so glad to have you as my friend. 😊
• in reply to
Lisa-anne.
Thank you for being my friend. Still at emergency room. Andrea had a third episode of hives more severe with facial swelling and airway difficulty. Pumped full of IV meds so should be released to go home again. Talk tomorrow.
Dan / Seattle
• in reply to
Oh Dan , I hope Andrea is alright that sounds frightening especially for a young lady, my daughter was no where near that serious with hives, just her asthma and that was her breathing, you just feel so helpless to help, hopefully speedy recovery, thinking of you and yours , worrying and waiting with you for some very good news. Xxxx
• in reply to
Lisa-anne
Don't know what I would do without you.
Hives broke out again this morning. Taking her back to doctor now. At least we have epi pens now. They used four meds in iv last night!
We trying Lisa-anne. Appreciate you so much.
Dan
• in reply to
Wishing you all the strength to get through this major symptom, sorrow for your daughter suffering and your struggle to be there with her and for her. Hopefully a bit of respite for you all with the Meds and pens. Stress and worrying is enough when your healthy. Fingers crossed 🤞 🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗
• in reply to
Lisa-anne.
Back home again. She resting comfortably at moment. Higher dose meds. Extensive labs in process. Just trying to get ahead of next wave that we know is coming. Better prepared now. Good internal medicine doctor in charge. Working on possible causes. Watching immune and breathing functions closely.
We will be okay. Not going to leave her at risk. Best thing now is to stay out of urgent care. That place can make you sick!
Stable is good. Your support fantastic. Thanks forever good friend. I carry my tablet to read your posts at clinic when it gets crazy. You bring peace into the chaos. Thank you.
Please let Lisa-anne sleep and feel better. That is My good hope for today.
Dan / Seattle
• in reply to
Thank you for your lovely reply, am happy that things are being supported, sorry not right words, your family are so great and supportive of each other, it's so heartwarming to hear, others like me haven't got that, I have my Trevor and I thank god that I have his love and support, I wish all of us on here struggling have the support and love that your family have and I have from my Trevor. One lady on here I want to reply to but get upset because I can't help her and support her through her so tough life she has. Have to finish for now, words not coming, wishing all well soon. 🤗🤗🤗🤗🤗🤗
• in reply to
Lisa-anne.
It's okay.
Back in urgent care again tonight with airway problems. Epinephrine used with Ativan chaser. Two hour observation. Next trip in there earns us a bonus outing to hospital admission.
She is back home resting with ever more steroids and agreement that may involve autoimmune vasculitis. Waiting on test markers due back tomorrow.
Failing to keep up. Emergency doc looked at me last night with those eyes saying "help me here" asking what I thought about using the ativan chaser on top of the epinephrine to modulate it.
I looked at daughter struggling for air watching the heart rate and BP climb on the monitor and mom, daughter and I nodded let's do it. The heart rate peaked below the spike high from the previous night. It took few hours but it eventually came back lower.
Struggled to control relapse first two hours this morning. Adjusted meds again. Keeping epinephrine within arms reach.
Sitting and watching.
Have never, seen or read anything like this. Probable upgrade to hospital on next go round.
If we are defining FND as psychogenic arising out of anxiety arising out of stress...then Ativan would calm the anxiety and the manifestations of the FND. It does in MY case.
If it's a result of anxiety, pumping epinephrine into the body would make the FND symptoms worse.
Now then, there are two major ways to deal with an allergic attack like hives. One is to give the patient epinephrine - the other is to give a dose of antihistamine. Antihistamine has a sedating effect.
So...were I the ER, I would have given her a dose of the antihistamine and hope it does double duty and calms her FND rather than give her epinephrine with an Ativan chaser to calm the side effects of the first med.
But I'm not a doctor so my opinion based on lengthy personal experience (as a person with FND and allergies) is of absolutely no value.
Previous ER trips had resulted in IV pump of 125mg steroid with pepcid additive and two additional h1 ) h2 receptor antihistamines. That cocktail plus albuterol to resolve airway difficulty produced positive resolution of manifestations that lasted about 6 hours before full blown recurrence which was worse than before.
Oral antihistamine meds were increased and Prednisone increased yesterday.
Again, presentation was temporarily suppressed but returned even worse last night before we had to go back to ER.
We opted not to use epi pen at home due to uncertainty and gave albuterol which relieved airway marginally but created severe physical distress.
Once in ER, doc had to use epi but thought physical distress might be compensated with the Ativan.
System was Chocked full of antihistamine so option was to restore breathing and try to keep heart rate and BP from spiraling upward.
From my view she was heading towards shock before we got to ER based on presentation.
That was basis for opting to allow the Ativan to stabilize the effects of epi to calm system after airway restored so that oral meds could continue to try and work.
This is very very volatile immune attack because allergen cause now ruled out by docs in ER and by GP.
So we try to modulate with oral meds until find a tolerance zone that avoids airway issue.
Also using topical steroids to supplement Benadryl cream which is helping with widespread eruptions and onset of sensation of being on fire.
Doc did confirm facial swelling as typical of angioedema which continues to fluctuate.
Everybody is guessing at this stage. We just trying to stabilize.
Another 24 hours.
Thank you for thinking this through and asking questions.
Sarcasm aside, I really am concerned about the epinephrine. I was given some just the other day by the dentist during my root canal. Standard operating procedure. My body was VERY unhappy about it. He didn't know that I would react that badly. Thank dog I'd taken an Ativan before the procedure started, otherwise things would have very much gotten out of control.
If epinephrine were the only option we'd be stuck. But it isn't. It's just the first choice for normal folks having an allergic attack. Docs need to treat the whole body not just individual problems. I firmly believe she was given the wrong med. In fact, dangerously wrong.
I know YOU...but since I haven't seen you in person....perhaps I need to doubt that. What empirical evidence do I have that you exist? A voice on a telephone? What if I'm hearing voices? Is it all in my head? Are you a figment of my disordered brain?
I buy them from Grocery Outlet when feel like splurging. Right now, working through the three containers of $1.99 each ice cream from Safeway that was on sale. Yummy. Thank God I am one that has to consume fats to keep going. Another clue?
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Information FND
What therapy if no signs of psychological problem ?
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WARNING: If you have FND and live in UK
