I've decided that people who share my medical maladies are much more help than the numerous doctors I've seen. Whether or not you think this is MS, I appreciate your feedback. And let's face it--most of you guys have probably researched different conditions to the point where you feel like you're going through med school. Since Dr. House is unavailable, maybe ya'll can help me.
I am a 24yo female. I have been passed around from doctor to doctor, with no diagnosis (meaning no way to treat me), and I keep getting worse. I have had a few of these symptoms since I was 15, most for the past three years, with new ones cropping up yearly.
Have been to two neurologists, a psychiatrist, two ENTS, and several primary care physicians. About ten CBCs along with iron serums, thyroid tests, liver function tests and B12 tests. 3 MRIs (since I was 15), and 3 nerve conduction studies. No results.
Symptoms include: severe hemicranial migraines that are constant one year and disappear the next, they make me vomit and unable to keep down medicine. No Rx has ever worked, although butalbital was helpful in a pinch to ease the pain. Worsening vision, just keeps getting blurry, I blink constantly to try to focus. Fluttering noise in right ear, no cause, sounded like a helicopter. It has come and gone over the years. Now I have pulsatile tinnitus in my left ear, ENT found no cause. It's constant, and is driving me mad. I can't sleep because it's so loud. Cognitive problems showed up around 2007 (memory loss, no focus) and was diagnosed as ADD. It has since gotten much worse, I slur words and stammer, can't finish sentences, and when I try to write (a passion of mine for a long time) I find myself either mispelling or using the wrong word altogether. I have a problem with word choice when I speak as well. At 15, along with the migraines, I started noticing muscle control problems in my left hand. Can't move a few fingers independantly of each other. I rarely use my left hand now. I drop things, and if I'm holding a remote or something I 'll randomly push a button with no thought or reason behind it, like my hands have a mind of their own. They found no problems on conduction study. Now I'm experience the same problem in both hands. The impulsive movement in fingers is so frustrating because I can't control them when I want to. I use my index fingers and thumb for must things now.
Now for the weirder symptoms...
I had a small patch of something that appeared on my knee for a month. I had my dermatologist look at it during a routine exam. She said it might be eczema and to put some steroid cream on it. That didn't make it go away, but didn't hurt it either. Afterwards, I kept going to my PC doctor for frequent bouts of flu-like symptoms minus the stomach upset, mostly muscle weakness and severe fatigue. He guessed that I was just picking up something viral, and would give me shots of steroids. Then I had an episode at work that scared me into action. I was a benefit analyst for a large office, and that was when I first started noticing the odd lightheadedness. It happened every time; If I bent down for a second to replace a chart, I felt like I was floating upon standing. One day at work while I was typing I noticed something like hives on one of my knuckles. It soon spread to my opposite hand and arm. I felt extremely dizzy, my face was very read, I began talking out of my head. Someone checked my blood pressure, and it was very low. (I've always had a normal or low BP, and anytime I feel like I have a fever, my temp is barely 98.6, so low body temp too I guess.) A co-worker drove me home, as I was unable to drive myself. I went to the doctor the next day. It seemed like an allergic reaction, which made no sense since I have no allergies and was doing nothing abnormal. Plus, I had often had itchy joints or hands at home and in my old home, which ruled out environmental causes.
He gave me a shot and put me on a two-week cycle of Prednisone. At the end of two weeks, I still felt sick and weak. Shortly after taking the last prednisone, the patch on my knee that the derm thought might be eczema spread all over my lower body. I went back to the doctor, and he gave me another shot and and sent me back to the dermatologist. Since this was obviously not eczema (they were patches of tiny red pin pricks, which resembled red bruises up close) she biopsied a patch on my hip and sent it off. She gave me another two weeks of steroids. The biopsy was inconclusive, but she mentioned that they thought it looked like Schamberg's Disease, which is only a description in and of itself with no cause or treatment. My regular doctor and I both agree that it is petechiae, leaking from my blood vessels. The steroids never made it better, only made it change color. The original patch that started it all is still visible on my knee, always there. Some weeks I'll notice new patches in odd places, but not as bad as that episode.
My mom, who is an RN and aware of all my symptoms, asked me to go have a work-up done for MS. She even told me that, for some reason, she had always known someone close to her was going to have it. This scared me, of course. After this I went back to see my neurologist because my cognitive problems were progressing at such a rate that my adderall no longer had any effect on me; I often felt like I hadn't even taken it. He said I had position vertigo, and tinnitus, and sent me to another ENT. After numerous tests, the ENT said I had no vertigo, and instead had lightheadness or dizziness caused by something other than my inner ear. In fact, I threw up during every part of the vertigo test. It was like torture! He didn't seem too concerned with the sound in my ear, though he told me it was nothing caused by anything on his end. I had done a lot of research (because the noise drives me up the wall), and I asked him to listen to it with his stethoscope. He did it after some hesitation and said that he could not hear it. I told him I could make it stop by applying pressure to my artery. He suggested that it was something wrong with my blood flow, and wrote up a report for me to take back to my neurologist. The problem with that idea is that it's usually objective pulsatile tinnitus that involves problems with blood flow, and it IS audible through a stethoscope (bruit). My subjective pulsatile tinnitus is indicative of something neurological. I went and had an ultrasound done of the arteries in my neck and they were clear. I currently have braces, so the MRA that I went for was useless, as the images were unreadable.
I also have periods of time where I have the offest feeling in my skin. It's not painful, but it's extremely uncomfortable, and I can't be touched. Almost like my nerves are all of a sudden super-sensitive. In my right arm, I often experience what feels like electricity shoot up into my arm from my fingers. To me, that would rule out any pinched nerves... the pain originates in my fingertips and travels up to about my elbow. I call it "restless arm" syndrome. It's uncomfortable enough to keep me awake some nights, though I can usually take one of my husband's Neurontin and it will ease enough to sleep.
My right hip is numb, the area over my hipbone. I have places on my body that feel bruised and hurt when I touch them, but there's no visible problem. Oddly enough, this always seems to be somewhat symmetrical. I feel it in the same place on the outside of my lower thighs most often.
I feel so hopeless. My neurologist is very dismissive (he's been that way since I told him that my migraines--which had made me so sick--had disappeared on their own.) I feel like I'm not being taken seriously, although its obvious that something is wrong to everyone around me. I can barely function. For the past several months I have felt so depleted, my muscles are fatigued, my arms ache from holding up my toothbrush. My cognitive problems are so bad that I can no longer go to school. The memory loss... I can't retain any information. I can't put together sentences. I can't express a thought without seeming brain dead. A few of the symptoms come and go, like the sudden joint itching, and heat does make my symptoms appear or worsen. My husband thinks I'm crazy, because I find 69 degrees stifling and unbearable, but 68 degrees is just right. But even when those symptoms aren't present, they aren't exactly in remission. I rarely go more than a few days without them. The only things I experience to some degree everyday are the deafening noise in my left ear, the hand problems, and the cognitive problems. But they only seem to get worse, never better. I can track the worsening of my symptoms by the drastic changes in my grades. I already had to drop a semester because I had two seperate bouts of something the doctor said was "walking pnuemonia" and then a variation of "the swine flu" that conveniently never shows up on tests. I keep trying to get through school, but it's becoming impossible. I can't write papers, I went from perfect scores in calculus to 40/100 scores. It takes me so long to do things, and it seems like I can't grasp anything that I didn't know 4 years ago. Learning new concepts is impossible.
I want to find a new doctor. I am unsure if I need to see an internist or what, but my neurologist is a no-go. Depending on my diagnosis, I may have irrepairable neurological problems because he chose to ignore my "weird, vague symptoms" (his words) and sent me to a psychiatrist to be treated for ADD with adderall while I've been getting worse for the past three years.
If anybody has any insight or advice, or shares some of these odd symptoms, I would be so grateful. I want to be as educated and informed as possible when I see my doctors, so that I'm not just given a dx of fibro and sent on my way.
And if it helps, these are the tests I've had done just in the past year:
Duplex Scan of Neck Arteries 3/17/2011
Thyroid Test for Free T3 Level (cpt Code) 2/28/2011
Antinuclear Antibodies (ANA)Test 2/28/2011
TSH Level 2/28/2011
Nystagmus Test 2/28/2011
Manual Sed Rate 2/28/2011
Free T4 Level 2/28/2011
Caloric vestibular test, each irrigation (binaural, bithermal stimulation constitutes four tests), with recording 2/28/2011
syphilis test 2/28/2011
Use of vertical electrodes (List separately in addition to code for primary procedure) 2/28/2011
Hearing Test, Comprehensive 2/23/2011
MRI Scan of the Brain 11/17/2010
MRI of Spinal Canal (Neck) 11/17/2010
Vitamin B12 Blood Test 11/3/2010
Folic Acid Level 11/3/2010
Iron Level 10/29/2010
Liver Function Tests 10/29/2010
Ferritin Blood Level, Iron Test 10/29/2010
Complete Blood Count with Differential 10/29/2010
Kidney Function Panel 10/19/2010
Spine Xray 4/9/2010
Neck Xray 4/9/2010
According to my neuro, the MRIs were clear. They were done without contrast. Despite what he says, something interesting showed up on my health profile on my insurance companies website. When I looked at my profile, it showed the procedures and notes filed to BCBS... the radiologist who took those MRIs notated degenerative brain disease. I saw that after the neurologist went over the MRIs with me, or I would have made him explain.
Basically, I'm tired of being diagnosed with viral infections and vague, nonexistent flu virus, and being told I'm ADD or have anxiety or whatnot. I just want a real, logical diagnosis, but apparently it's going to take an act of congress to get one.