Tremors, mobility issues, and mental health
It has been a long winding path in this post rotator cuff surgery recovery process.
After one year, ten months, and eight days, I had yet another neurology consult again today.
I have yet to have a definitive diagnosis.
I have had five MRI’s, one EEG, and two EMG’s done plus four different set of lab works completed. I still do not have a diagnosis of the tremor.
I attended physical therapy weekly for one year, two months, and approximately sixteen days. I still do not have full mobility of my arm and I still have a tremor.
Then today, the third neurology consult came back full circle to what the first said, it is all in my head.
Oh, he prefaced several times in the conversation we had that I was “not crazy”. He felt that the symptoms I was exhibiting did not correlate to any known diagnosable causes. In other words, he did not know. He mentioned a possible conversion disorder also known as a functional movement disorder or functional tremor.
So, once again, I understood what he was saying and what the other neurologist said before and asked them to formerly put that diagnostic opinion in my medical record. To put the medical diagnostic code officially in my medical records the cause of this “undiagnosed tremor” is a functional tremor. Once again, another neurologist backed away from that request, and wanted to look at the previous testing results before committing to that expert opinion. I have a follow up appointment in three months.
I understood and have read through many articles related to a “Functional tremor”. I understand that the surgery may have “triggered” a trauma response, aka the tremor. That there may be an underlying deeply rooted trauma that I have not faced.
The problem with that diagnosis is that I have been under psychiatric care for over eight years now, November 15, 2022, will be nine years exactly. I have been hospitalized three times during this period to deal with those thoughts, emotions, suicidal ideations, and trauma. All related to the sexual assault, harassment, physical, verbal, and emotional abuse that I endured. To deal with the resulting major depressive disorder and anxiety.
At no time, during any of those years of therapy nor the years before therapy, did I experience any physical manifestations of a trauma response. The closest physical response has been insomnia, headaches, anxiety, stress, and weight gain. All of which have been dealt with or are still ongoing through my group therapy and counseling.
The other issue I have with that diagnosis is the fact that I have told every doctor that a tremor was triggered during physical therapy with certain exercises for the shoulder. Those were in my physical therapy notes. The physical therapist had me lessen the reps and then altogether stopped those exercises until they got a diagnosis of the tremors. They did not want to make it worse. Then physical therapy stopped altogether.
After all these tests, lab work, and expert opinions, why are they so against putting that diagnosis in my medical record?
Why is that a terrible thing to diagnose?
The way I see it is, if they put that into my medical record, it validates the testing that has been done. It alleviates the need for further unnecessary testing. At the same time, it opens further mental health care options that can be made available to me. If that is truly what the problem is.
The lack of response to my request to put the diagnosis in my record is not giving me any other options related to care or recovery.
They are only holding back the care that I supposedly need.
Medical professionals are fallible, all human beings are.
They are the experts in their field due the amount of time they put into education, learning experiences, and continual growth related to their careers, that is why patients go to them.
Yet, they are so wrapped up, here in the United States, with the possibility of being under the threat of malpractice, being sanctioned, or losing their licenses, that they sometimes fail to listen to their patients.
I have yet to be heard on my request to put those opinions into a formal diagnosis.
Trying to work with these “experts” has gotten me nowhere.
The first neurologist automatically said it was all in my head based upon no testing or lab work. She also happened to be looking at my VA Mental Health Record when I walked in for our first appointment in which she was forty-five minutes late. My whole record was on her computer screen. After I pointed out that and questioned her method to diagnose me sans any lab work or testing, she did a simple Parkinson’s test involving drawing a spiral on paper. She looked at both hands as I was in the middle of having a tremor. She then dismissed me and told me that I should probably go back to behavioral health and be put on medications. I had waited six months for that appointment.
I filed a complaint with my patient advocate and requested a second opinion. It took another six months to finally get any sort of testing and lab work done with the second neurologist.
The second neurologist decided that I was diabetic and that was one cause of the issues. The lab she sent me to, reported my A1C levels were over 9.3 which gave me a serious scare. I went back to my primary care provider to have a second set of lab work done the following week. That came back that my A1C levels were too low, it was below a 4 , which was a cause for concern as well. A second set of blood was drawn and sent to an endocrinologist; I am not diabetic.
The second neurologist did her testing and said it was a pinched nerve plus that I did not have carpal tunnel. She wanted to put me on seizure medication but did not diagnose me with seizures. She said it may help the tremors. She also would not give a straight answer about the pinched nerve and what was to be done to resolve it. Then proceeded to request another set of lab work for the diabetes because she said the VA always lies about the testing. The lab work came back again, I am still not diabetic. Once again, my questions and concerns were dismissed.
I had already been through several EMG testing for the carpal tunnel, prior to the rotator cuff issues, and had previously consulted with a hand surgeon who concurred that I needed carpal tunnel surgery based on those results. That diagnosis is pending a secondary consultation request since the last consult is now more than a year old. Then surgery may be scheduled.
I spoke with a second opinion orthopedic surgeon about the second neurologist testing and diagnosis concerns. He did not like that a pinched nerve was the diagnosis nor that she was pushing seizure medications. He requested the second EMG of the whole arm. The second EMG request took three more months.
I went to the second EMG last week and unfortunately, the hospital they sent me to uses the same second neurologist for their testing. Once again that did not go well with her. I have a second complaint being filed with the VA patient advocate as well as the hospital where it was performed based on her behavior during and after the testing.
Before this latest testing, the VA Care in the Community program had already placed a third neurologist opinion request. That is the person I saw today after waiting another five more months.
Then he mentioned the conversion disorder and I discussed with him my questions about the EMG last week and why my bicep to neck and back of shoulder was not tested? He said it may have been unnecessary, but he would have to see the test results. Unnecessary? That was the whole reason for the request, to isolate the area that is causing the issue.
I pointed out that was the reason for the EMG request and the ongoing tremors I have had for approximately one year and eight months. That’s when he backed off the functional tremor diagnosis comment and my request to put it officially in my record.
Now, I am waiting once more for another review of my test results, another consultation, and still a diagnosis.
I am tired.
I am tired of this tremor that randomly shows up whether I am active or not and waking me from sleep.
I am tired of the constant shoulder and arm pain.
I am tired of the numbness, tingling, in my hand and fingers.
I am tired of the loss of hand and finger dexterity.
I am tired of my arm and shoulder being stiff.
I am tired of not being able to lift more than 5 pounds.
I am tired of the coldness my arm goes through at night and in the mornings.
I am tired of getting the runaround and not being heard.
I am tired of being tired.
Why are they making this more difficult than necessary and dragging this out?
If they believe that the tremor has no neurological explanation, then diagnose that, and let me move on.
Give me that opportunity to try and resolve this another way, through mental health care options.
Quit wasting my time and yours.
Thank you for stopping by!
Have a great week!
Peace, love, happiness, and good vibes, always!