Monday, May 17, 2010

what is wrong with me?

My mysterious illness is striking again. I should have known. A couple of days ago it started with the mysterious numbness and tingling in my legs. Today I had one of the debilitating weak spells at my desk that lasted for about an hour. I literally had to put my head down on my desk. Most of the time, they come in the same time of day (after lunch) and last for about the same amount of time. I have considered many possibilities: low or high blood sugar, dehydration, anemia, pernicious anemia (B12 deficiency), hypothyroidism. At a point, a doctor even thought I had an adrenal disease. I had a neurologist test me for multiple sclerosis.

This all culminated in me being admitted to the hospital in November 2008. Every test known to man was run, and ruled out. I had extreme numbness in my legs to the point that I couldn't walk, tremors in my hands, and I had left-sided weakness and slurring of my speech (strokelike symptoms). I was in the hospital for three days and they didn't find a damn thing wrong with me, except for a slight B12 deficiency.

My symptoms include:
numbness and tingling in my extremities (most notably my legs/feet, and my hands/fingers)
debilitating weak spells in which I cannot stand up or even hold my head up at times
sensitivity to cold (though I've had this my whole life)

I remember in 2008 when it got so bad that I could not get out of bed. It's improved, slightly, but it's something I deal with on almost a daily basis. Many mornings I wake up and my legs are numb and tingly again (imagine your legs are asleep). I get out of bed and move around, but the sensation never goes away. I've seen so many specialists that I can't even keep up: neurologist, endocrinologists, etc. They have performed CTs, MRIs, EEGs, a nerve conduction test... checked my hormone levels. Nothing nothing nothing. At the hospital, they never could figure out the cause, so for insurance purposes, they coded it "anxiety." My ass.

I've come to terms with the fact that I will probably deal with this the rest of my life, but I just want to know what it is.

I can barely feel my fingertips as I type this.


RMarie7 said...

Unfortunately, those symptoms are pretty common for thousands of diseases. Grr. I hate this. MS was a decent idea, but its so hard to diagnose. At this age, the tissue in the brain could start showing the signs, but it could be well into the 30s before its obvious.
Do you have any kidney problems? Joint problems?
Mom had similar symptoms as yours, though not a severe. She was tested for MS and lupus. Eventually, they found a Chiari malformation. (I probably spelled that wrong.) She's had MRIs and all that before, but they didn't see it until she was late 40s. When they did your MRI, was it only the brain? Did it extend to your neck?

(Hehe. Sorry, i'm puzzled by this, so I'm very curious. I know I'm not a doctor, but damn it, I'll ask some. :D)


gingergirl said...

I can't remember what all they did the MRI of... I think just my head. I don't have any kidney problems but I do have achy joints at times. They have thought that the weak spells were caused by either hypothyroidism or an adrenal disease, but all of those labs were normal. I'm not even sure if the numbness/tingling/left sided weakness is related to the weak spells or not. I have a B12 deficiency, so when I took b12 injections that made the weakness go away, but the numbness stayed. I am not giving up that I will one day find a diagnosis. Thanks for your input. I think a lot of people think I am making it up, or that I'm a hypochondriac. My left arm was completely numb two days ago, and I woke up yesterday and it felt fine. The numbness in my legs and feet is a constant, but some days are worse than others. My nerve conduction study yielded normal results.

RMarie7 said...

Oh, I believe you. It's the nature of some diseases to hide.
B12 deficiency, huh? It could account for the weakness, too. There's a autoimmune characteristic to Pernicious anemia/B12 Def, that could have affected the nerves. Even if nerve tests came back normal, the nature of the disease is off and on (as you can attest to). May be fine in tests, but if any damage is done to the sheath, disruption can occur anytime.

If they found B12 Def, I'd assume they did a Schilling test to follow up... depending on how you RBCs looked. And an antibody test would be a good idea too. It sounds autoimmune, and autoimmune anything will lead to nerve damage, fatigue, inflammation, etc. I asked mom about it, and she mentioned some specialist at CMMC. I know you've seen a lot of them, but I can get the exact name if you want.

gingergirl said...

That would be wonderful if you could find out the name. Yeah, I too thought that maybe the pernicious anemia could be causing the numbness as well. I went to the Vitamin Store yesterday and bought some 1000 mcg b12 pills. I've been taking 5 a day (the maximum recommended dosage). I think they are helping but I'm not sure yet.

You know, I am not sure if they did a Schilling test.

Thanks again for your input and any info you can provide would be greatly appreciated!!!