Join Date: Mar 2017
Looking for someone to help me find a good neurologist for my husband in Southern ME
My husband, Elijah, and I have been struggling to find proper care for his neurological needs (described below) for a long time now. We were only recently able to visit a neurologist last Wednesday, which did not go well... The neurologist did not do the testing which the Primary Care Physician wanted (EEG) and instead basically went through the sorts of questions people ask to check to see if a person has had a concussion (Elijah got the majority of them wrong), the neurologist did not want to listen to any talk of Elijah's symptoms and even prevented either of us from going into detail about Elijah's symptoms, and after about ten minutes, the neurologist concluded that all of Elijah's symptoms are behavioral in nature (despite Elijah having seen multiple behavioral health specialists and psychiatrists who have said that the symptoms listed below are neurological), and that his dysfunction is just a coping mechanism for PTSD, and sent us away.
As such, I would like any recommendations for a neurologist within the Southern Maine area (preferably in the Greater Portland area) with whom we would not have a similar experience. If at all possible, we would like a neurologist who can be covered through the Freecare health coverage offered through the Maine Medical Center; while I am a US citizen, Elijah is currently what is called a "non-lawful permanent resident" (basically a status for those seeking to live in the US who are on parole from ICE detention, and are allowed to live within the US while awaiting the outcome of their immigration cases); he has very limited options for health insurance, and we aren't doing well at all financially.
Elijah's symptoms which are suspected to be neurological are as follows:
1. Gradual decrease in cognitive function over a period of approximately two years (reduced ability to communicate, reduced ability to comprehend ideas, reduced ability to retain information in both short term and long term memory, overall reduced coherence)
1a. Interestingly enough, the above does not seem to affect his ability to speak what little Spanish he knows
1b. The deterioration described above seems to have become drastically more rapid over the last several weeks.
2. Gradual decrease in motor function over the same period as above (increased shaking, increasingly awkward gait when walking, decreased manual dexterity)
3. Episodic extreme decreases in both cognitive and motor function for approximately one year (often regressing into an infantile state, which has increased in frequency to the point where he now spends most of the time in said state; we've heard differing ideas as to whether or not this state is the result of seizure activity)
3a.Above is triggered by things including, but not limited to, exposure to marijuana smoke, hunger, loud noises, and oddly enough, relaxation. Stress, even when triggered by PTSD triggers (see below) but moreso when stressed in an inciting manner (i.e. anger) actually seems to reduce the frequency and severity of these episodic states
3b. He has told me that, during these episodes, he feels as though all of his mental functions are being handled exclusively by his right frontal lobe, with all other parts of his brain turning off; right frontal lobe traumatic brain injury suspected
4. Occasional episodes of agonizing, immobilizing pain which is focused on one side of the body, though not always the same side
5. Hallucinations when suffering from episodes described in 3 and 4, often involving snow, black dots, bright lights, and other visual anomalies, as well as sensations of falling; very rarely, will get hallucinations that he is drowning in the ocean, and that I am an octopus or squid. He does not remember these hallucinations after-the-fact, and the hallucinations have not been determined to be the result of schizophrenia or similar mental illnesses
6. Extremely poor social skills throughout known life
7. Complete lack of any sense of direction and very poor spatial orientation throughout known life
8. Need for certain tactile stimulation, such as biting others or touching of sex organs, despite the latter being physically painful visually disturbing for him, throughout known life
9. Getting sensations of taste triggered by touch and sound; suspected synesthesia
Elijah has been diagnosed with an unspecified seizure disorder after being scanned slightly over a year ago; our primary care physician wants further testing, and while she agrees that there is a seizure disorder, she does not suspect that it is epilepsy. Otherwise, Elijah has been evaluated for behavioral and other mental health problems, and does have Asperger's, PTSD, depression, anxiety, and gender dysphoria, and he does have various attachment problems due to having been severe abused. Elijah's PTSD triggers include seeing visuals of violence, bloodshed, and gore, which result in panic, screaming, extremely rapid breathing, extreme tensing of muscles, and more, and he also has extreme difficulty when using bathrooms due to PTSD triggered by being even remotely disturbed while attempting to relieve himself. Elijah is transgender, and identifies as male.
Due to the extreme nature of the abuse which Elijah had grown up in, I cannot reveal much else; I may in the future discuss other medical concerns and what he has been through, but right now, I just want a recommendation for a good neurologist.