Hello,
I am a 47-year-old Caucasian female in "limboland" now since 2003 when I had the first of an acute onset of symptoms including blurry vision, trigeminal neuralgia right face, and right-sided body numbness and tingling etc.
I have been to the Mellen Center last 2 1/2 years ago and my MRIs still showed no lesions.
Now at this time, spring 2009, I started with urinary incontinence at nighttime. For 1-2 days I had blurred vision which was reminiscent of the past, which almost triggered a panic attack. I started having trouble with my stomach in which my PCP started me on Nexium. I thought it was just a bout of gastritis but then 1 week later I woke up one morning dizzy and sick to my stomach, started vomiting clear stomach fluid all day. This I am thinking was due to possibly vertigo.
After this I started with feeling sick after eating, bloating and right upper quadrant pain just right of the midline, tenderness etc. I went to see my PCP because I was wondering if it could be my gallbladder. I had an ultrasound and a HIDA scan which were both normal.
Now 1 week later, my pain in the right upper quadrant has changed to primarily the rib areas anterior, lateral and posterior sharp/stabbing pain in character. Also I have an extreme pressure sensation that radiates around to my chest as if someone is grabbing me from behind and squeezing.
The first episode I had was last week in which I was sitting transcribing and felt dizzy, short of breath and thought I was having a heart attack. I settled myself down and about 15-20 minutes later it stopped. This is a new symptom.
There is something that happens to me each year always starts in the spring. I do have pseudoexacerbations in the summer with tingling/numbness in extremities due to heat, skin rashes, headaches etc., which I now know how to handle and expect. I have also been treated at the Headache Clinic with head/neck injections in the past. I have also been seen by a cardiologist at CCF for postural hypotension and underwent a tilt table test in which my bottom number went down into 40s on standing. I was told to either use compressive stockings when sitting working or go on beta-blocker therapy. I chose the stockings.
The spring of 2008 I had an allergic reaction to sulfa drug/Bactrim-DS given to me by PCP for flu/cold, which sent me into a severe anaphylactic reaction--terrible thing. I had only taken 2 pills which sent me into panic attacks, pacing the floors, mouth ulcers, difficulty swallowing when I took a hot shower turning red all over my body. This was just as terrifying as the first onset of symptoms in 2003 except without numbness. I also had a right shoulder impingement syndrome/frozen shoulder in which the orthopaedic surgeon told me to keep seeing the neurologist, which was an underlying message to me that this is autoimmune related.
It has been a LONG 6 years now. I have not been back to my neurologist now for about 3 years because I was always so upset because nothing would show up on my MRIs, evoked potentials etc. so I stopped going. The last time I did see him he told me to "hold on" as if to say there would be an eventual diagnoses.
I guess, I am looking for some reassurance that I will get a diagnosis and only then will a physician give me some kind of steroids to treat this disease? Right now the only thing I have been continuously given is gabapentin, Imitrex for headaches, and Lexapro which I discontinued.
The physicians at CCF have been very helpful to me in the past and I greatly appreciate your comments.