This post is more an opportunity for me to vent my frustration at the medical care I am receiving at the moment. It will be long winded and probably not worth reading but I have to vent somewhere at this point in time.
My wife and I moved to Arizona 6 years ago from Philadelphia, PA. In Philly, where I had lived all my my life ( I am 43) I had the same doctor for over 38 years. This man is the ONLY person I trust with my health at this point, and the experience I have had over thelast 8 months has confirmed this for me, and I truly wish I was still back in Philly and am considering moving back because of this.
I must preface this story with the fact that I have always been healthy and have never had any type of medical condition other than common colds, seasonal bronchitis etc. I have never been in a hospital, nor required any emergency room care other than stitches once or twice. I do not have any family medical history as I found out at 38 that I was adopted.
On Christmas eve 2010, I had a mildly physical confrontation with my 18 year old son. Nothing major, typical teenage stuff. About 20 minutes after the fact, as I was eating dinner with my wife, I became extremely dizzy, started sweating profusely and began experiencing pressure across my chest and a strong very sharp pain in my neck and a headache like none I had ever known accompanied by a loud ringing in my ears. My wife took me to the Emergency Room and I was admitted to the hospital and was there for 9 days.
It was obvious to me that they were concerned that I was having a heart attack ( I am a big man, athletically built - but a little soft anymore due to my age). I told them time and time again that my heart was fine - the problem was the pain in my neck and the dizziness. I also was having serious memory and cognitive problems - I couldn't remember where I had grown up, where I met my best friend, what college my wife went to, where my mother lived etc. My speech was slurred and I had a hard time picking the right words when I tried to talk.
I underwent a battery of tests over those 9 days that amazed me - all of the cardiology tests were performed first - EKG, Stress Test, Cardiac Cath, chest x-rays, CT Scans etc. All these tests came back negative and showed my heart to be fine with no evidence of any kind of heart attack or heart disease. I did (do) have high blood pressure that was and is well under control with Dyazide and aspirin, and they put me on Linsinopril as well.
They were about to discharge me - despite all of the dizziness (nausea and vertigo) and cognitive issues I was suffering from when my doctor from Philly told my wife to insist on a neurological consult and workup as to him it appeared (based on the preliminary information) that I may have had a stroke.
Was given EEG, CT Scans again of my head, MRIs (c-spine and brain), MRA, and was seen by the neurologist on call. All of the tests came back negative except the MRIs, which showed 3 extruded discs in my neck and a T2 intensity lesion, about 1.5 cm in size in my left cerebellar peduncle(?) respectively. The neurologist poo-pooed this finding saying that it looked like an old injury or something (but I had never had any type of head trauma or any other major trauma for that matter) but ordered a lumbar puncture to test for MS. This came back negative. My wife asked if stroke was a possibility and the neurologist said no, she didn't think so.
Nothing else happened and I was discharged form the hospital with instructions to follow up with the neurologist in about 6 weeks as well as the cardiologist.
I had no health insurance at the time due to being unemployed, and because of the huge medical bills incurred I was able to get Arizona's medicaid - called AHCCCS. I was assigned a primary care physician and quickly made an appointment to see her. Meanwhile, I had all medical and test results sent to my doctor in Philadelphia - who again said that it appeared that this was a stroke.
The memory, slurred speech and dizziness and headaches continued unabated, and 6 weeks later I went to the neurologist for the followup. My wife had been keeping lists of the things we were experiencing, the things I couldn't remember and anything new that came up. We discovered I was unable to write - it looked like kindergarted chicken scratch and took me minutes to even write my name, and that I was having difficulty walking (almost like I have a trick right knee or something) and picking things up with my right hand. This was added to the list and all was taken with us to the followup appointment.
My followup appointment lasted less than 5 minutes - the neurologist was notinterested in the least in anything we had to say, did not look at the writing samples (before and after christmas eve) that my wife had brought and asked me a total of two questions while we were there before sending me home with an Anti-Depressant and saying that the cause of my problems was anxiety and depression.
We were completely taken off guard by her arrogant and dismissive attitude, but left. I made an appointment with my primary care doctor again and went over all of this and what the neurologist had said and she said that was not right and referred me to another neurologist. My doctor back in Philly is still insisting that this is all very indicative of a cerebellar stroke and that I needed physical therapy and other treatments to try and get these things to improve, but was more concerned that I may have another stroke.
Over the next three months (which it took to get into the new neurologist) the memory issues cleared up. I still sometimes have a hard time talking, (slurry and having trouble picking the right words), but I can now remember where I grew up and where my mom lives and all the other things. My writing has somewhat returned to normal.
The neurologist ordered new rounds of tests including MRI, VNG (video nystagmus test), ENG (Electro nerve conduction test), EEG, Neuropsychological workup, and a hearing test. All have been done except the neuropsychological exam and the hearing test. The MRIs showed no new lesions and the one that is there has not changed, and my top 3 discs in my neck are still messed up. The vertigo test (VNG) showed some nystagmus in a couple of positions - both unfocused and focused, but more interstingly suggested a lesion in my left inner ear as well. So now I am off to an ENT to get this diagnosed (supposedly) as well.
I am continuing to have debilitating attacks of vertigo about 10 to 15 times a day. There is no warning sings to them coming and sometimes they last 20 minutes and sometimes well over an hour. The ringing in my ears has also continued non-stop, and is sometimes so loud that I cannot even have a conversation - I find myself paying more attention to it then anything I am thinking, saying or listening to. I still have trouble with my right side, like with walking and picking things up sometimes and numbness and tingliness in my arm and leg. I also feel tired all the time even though my sleep schedule has not changed at all.
This has been going on 8 months now, and I truly am becoming frustrated and depressed and feel like I have nowhere to turnn to get help other than to go back to Philly to my old doctor. I am SO frustrated that nobody (doctor-wise) seems to give a crap about any of this and treats me so nonchalantly. I have stopped complaining about it because it was starting to seem like all I could talk about, even though my wife has been 100% supportive thus far, I dont want to push her away. I am being thrown off the crappy medical insurance I have on July 31st because the 34k my wife makes per year is too much for me to stay on it, my appeal has already been denied, and after the 31st all these expenses will be out of pocket.
I feel really angry, frustrated and now officially depressed to no end over all of this - I just want to feel better and not dizzy or nauseous every damn waking moment of my days. I just don't even know where to turn now. I will not be able to afford to even continue treatment after the 31st of July, and my wife's job does not even offer medical insurance.
Argh.
Anyway - I just needed to vent this and share the story - maybe somebody else is going through something similar and might be able to relate or offer some suggestions. I don't know. All I do know is that I do not want to spend the rest of my life feeling this way and hearing this damn ringing in my ears - it's making me nuts!
Jack
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