First, thank you, all of you, for all the help you've been giving me without even knowing it. I've been reading lots(contrary to doctor's orders-- apparently if one researches one's body one is obsessive) and these pages have offered some of the most valuable information and reassuring support.
I am a 30 yr-old caucasian female with two children through foster-adopt(the only reason I make this distinction here is this for medical relevance-- Five years ago I started having unexplained miscarriages, and eventually had two positive tests for antiphospholipid antibodies in the midst of them. Treatment with aspirin and heparin never helped. Ultimately I had 7 early miscarriages total. With the arrival of my oldest daughter, who was medically fragile, I happily stopped seeing doctors and focused on her medical needs, adding a daily baby aspirin to my morning routine and forgetting about sitting on tables in paper gowns).
Other than miscarriages my only other health issue has been severe major depressions. I've been medicated for this since I was 16 and have learned to manage them pretty decently through the years.
Anyway, this summer, I started feeling "earthquakes" through my legs. Realized nothing else was moving.
Started becoming extremely fatigued, to the point of needing to be horizontal. Felt self dragging. Felt simply soaked in fatigue- it wasn't abating with rest. Was markedly different than fatigue with depression-- the desire, the need to do things was there-- I simply physically couldn't.
In September of this year, noticed feet started going numb, starting with toes, even while walking around barefoot.
Noticed lots of involuntary muscle contractions while laying down, esp in feet. Sometimes clenching, sometimes shaking.
Was referred to rheum because of history. Rheumatoglogist said based on history, felt I was for sure in remission for some kind of "autoimmune activity," but also, based on exam and bloodwork, that it certainly wasn't active now.
A week later there was one 36-hr period where the numbness became very severe and didn't abate. Was as though feet and legs were novocained, as well as one arm, and eventually the other arm as well. Was as though legs were "alive" at the same time, carboonated and fizzy. Limbs felt large and fuzzy. Felt like they didn't belong to me and were very far away. Kept hitting them to try and "feel." Needed railing on stairs. Suddenly couldn't pick up the baby. During this same period was having trouble emptying bladder. Would have the urge to go, would sit down, and-- nothing. Was like the connection was faulty. Extremely uncomfortable. Pressed on bladder. Would usually eventually "dribble" something but never felt like I had gotten it all out.
Went to ER as numbness was subsiding. Neuro noted hyperactive deep tendon reflexes, decreased vibration on toes, positive Hoffman's sign on right hand. Neuro ordered brain and spinal MRI with and without contrast, and a zillion blood tests. Said she wanted to do an LP as well. She left.
Had MRI. ER doc came back and said, "You don't have MS. No lesions. Also, no cord compression. Your MRI was totally normal, but neuro wants to admit you." He implied the LP was a shot in the dark, that nothing else was coming up on bloodwork, including the aPLs I'd "said" I'd had. Implied the reason she wanted to keep me was legal liability, not medical. Numbness was subsiding and I could pee without issue again so husband and I decided to leave AMA, with promises to follow up with neuro in office. For absolutely no good reason I felt embarrassed. Like maybe I was a hypochondriac. That they weren't going to find anything, and meanwhile people with REAL medical problems were going without care all the world over.
WHY-OH-WHY did I leave? Because I didn't know about what 1.5T machines can miss, that there was a good, valid reason for an LP, that the neuro wanted to do sensory testing and have all kinds of consults. That I was now testing negative for aPLs-- the only thing showing up on bloodwork was a mildly positive ANA. I didn't know how awfully hard it is to get into see a neuro, that the one I saw in the ER and liked very much didn't take my insurance.
Went home and struggled with insurance company. Rheumatologist reiterrated that this wasn't autoimmnue, but neurological. Struggled to get in with neuro. PCP made some calls.
Two weeks later Neuro number 2 gave me the most cursory of exams. Didn't look at my labs or MRIs. Was patronizing about my reflexes being hyperactive, handing me the mallet and running to the door. He all but petted me on the head. Sweetly told me everyone has muscle twitches, was condescending about the other neuro, implied she was "overzealous." Said if my parathesias were signficant, I would be feeling them all the time, not on and off. Neuro # 2's Diagnosis: migraines. Never mind that I don't have any history of migraines. But if I wanted to schedule an appointment to come back, THEN we could look at the MRIs.
So I go home, cry angry, helpless tears, and start having trouble typing sometimes, my fingers feeling "rubbery" and weak. My legs keep me up at night with their sometimes stabbing pains in the toes and the feeling there is a "Zoo" contained in them with all the tingling and shaking. Once when I'm driving it feels like something is stinging or biting my toes, and I have to pull over and look down and nothing's there. My ears ring on and off. Sometimes it feels like I'm walking on a boat that's floating in water instead of solid ground. I go to the opthamologist for a check-up and he finds 20/15 vision but significant visual field loss. I am retested a few weeks later. It's still there.
Neuro Number 3 opens my MRIs on his computer and goes, "A-ha! There's one. There's one. There's one." He scrolls through super fast and blithely points out white spots. I hadn't seen my own MRIs, and I am startled he's seeing anything; the radiologist wrote "totally normal." on all three reports-- not just his impression, but in his description. He mentioned no hyperintensities or foci or anything. Then Neuro #3 does a very thorough clinical exam. He notes that I am strong, that there's nothing wrong with my walk, and that I "sure have written a lot of symptoms down." as though I get my kicks from making his life complicated. A)They're all there. B)I thought you were supposed to be thorough. Anyway, the exam continues. "Interesting," he says. "You have no abdominal reflexes." I ask him what this means. He says, "Probably nothing." I ask him what can cause this. He says obesity(I weigh 110 lbs), or multiple pregnancies(never got beyond 8 weeks), or abdominal surgery(no.). I push him a bit on this, but don't realize the possible signficance until I get home and read that approximately 2/3 of MS patients don't have abdominal reflexes.
Then he says, "I agree with the radiologist. Normal MRI." I ask about all the "spots" he pointed out before. He says, "We see that with normal aging." (I am all of 30). "Or with Migraines" (I've had maybe 3 in my life-- all mild). Then he says, "with all of your symptoms, I would expect to see a scan much worse. So it's not bad enough to explain your symptoms and therefor not the cause of them. Also, you're not old enough for primary progressive" (huh?)
He says that in order to make me feel better he'll order nerve conduction studies, but wants me to know they take hours and they're going to come back normal. Then he says if I REALLY want him to, he'll do an LP, even though that's going to come back normal, too. I try to explain how I don't *want* a spinal tap, but--- anyway, we agree on doing the sensory tests first.
Good grief! This diagnosis thing is not for the faint of heart.
Thank you for listening.