Let me start off by saying this might end up a full on novel and I apologize in advance. I am searching for advice and hoping you might help. It might end up long winded because I want to give you a run down of who I am and what has led me to seek online advice rather than continuing with a doctor. I can be light-hearted about things but please don’t receive it as a lack of seriousness. It feels a little morbid simply listing symptoms and saying, “please help!” So here we go with a little ‘about the author’ section.
I am a 31 year old male. 6’0”, brown wavy hair. I enjoy candle lit dinners in front of the television and looking for that special someone who loves Chinese take-out as much as I do. Anyway, back to the medical. I have had the run of the mill bloodwork to check blood count, liver, kidneys, thyroid, etc. Everything a-ok.
Roughly two years ago I opened a new business. So far everything is going great, thanks for asking, but like most new businesses, my taxes show a loss due to large start up costs. When health insurance enrollment comes around, I am forced placed into Medicaid due to the losses being greater than my income. I have appealed both years with no luck. It boggles me that they have someone knocking down doors to pay for health insurance and they decline the offer.
I’ve had strange things happen with my body on and off (mostly off) over the last 10 years but last March things went haywire. Enough for me to see my GP. He ran an ANA test that came back positive. Now, from what I understand a positive ANA can be taken with a grain of salt. However, mixed with my symptoms, my doctor referred me to a neurologist and a rheumatologist. This brings my to why I’m here.
Due to the Medicaid situation, there is not one Rheumatologist in my city that will see me and the closest Neurologist is 5.5 hours away and 10 months out. 10 months fly by and work emergency came up and I could not make the appointment. You read that right.
I am not here searching for a diagnosis and I am not panicked. I am here because there are a few things that have caused me some concern: my symptoms, the positive ANA and my family history with autoimmune diseases. My uncle has MS, another uncle with ankylosing spondylosis and my great grandmother has ALS.
Normally, I would go to a doctor and figure this out. Guess what? Not how it works on Medicaid. I guess I am searching for advice on whether you believe I am on the right track or way off base. Whether you believe, from your experience, I should be more aggressive in trying to get my GP to help me. And maybe just to hear your experiences dealing with doctors before diagnosis and how you dealt with it.
So, what has lead me to an MS forum over others? I could list 1,000 reasons but I will only bore you with the things that is hard for me to write off as “stress”. Drum roll, please.
- Starting March one year ago I began to oversleep. I went from getting up at 7:30 each morning to suddnely waking up at 11:00 to find I missed half the work day. Some weekends it was 1-2 pm before I got out of bed. It was college all over again, minus the hangover. During the week when I was at work? The best description is feeling like nothing was real, everything was hazy and that my eyes couldn’t keep up with what I was doing, like my sight was always moments behind where my eyes would look. I was exhausted.
- Charlie horses came. For about a month during my hibernation, my body decided it enjoyed cramping. I would stretch my upper body and my bicep would contract in response. For weeks I had anxiety every time I got out my car. When I would exit the vehicle, the muscle where my thigh and butt meet would contract. It was so primitive - muscle slides across seat cushion, sensation causes it to contract or flutter in response. One specific night I’m pretty sure satan came to visit. I went to visit my niece and nephew at my parents house and walked outside to grab something. 10 minutes later I was calling my mother to come get me off the cement outside. When I got out the car, my butt/thigh had slid across the seat and the Charlie horse from hell came, and stayed, and stayed. No matter how much I stretched, I could not get the muscle to relax and stop cramping. Sore for days.
- I went through a week or two when I would take a sip of liquid and it would send a lightning bolt through the left side of my jaw and through my entire head. Imagine the flash on a camera. That’s what my head felt like, with pain. Even room temperature water would electrocute me.
- I wake up mid-sleep with dead limbs. Not the I slept on my arm kind. I will wake up on my back and both arms are dead until I shake them awake. It usually comes in spurts. Not always tingling, just straight up dead and the anxiety of whether I will ever have arms again sets in. Every time. Why won’t I learn that they will come to life soon. Take a breath, jeez. The first few times I wrote it off as I slept on my arm, then it would be my leg, then both my legs. Only when I wake up and they always come back.
After these things, I see my doctor. Positive ANA and a never ending wait that leads me to seek help from Dr. Google. Great, now I’ve got something I never heard of that will kill me before I learn to pronounce it. Next I end up going to the hospital because…
- For a few weeks I had a situation where I would get dizzy and lightheaded when standing. Short version, I got out of bed and heart rate monitor began beeping and the nurses rush in. Turns out simply from standing my heard rate went from the 80’s to 140’s and I had tachycardia. They said I was dehydrated and sent me home. Biggest eye roll in the history of eye rolls.
I’ve been trying to pay more attention to my body and what it is trying to tell me while I figure out what my next move is but here are a few things I notice about my self that I find weird or disturbing.
- Forgetfulness. Not your typical forgetful and not consistently. It’s the kind of forgetful where I’m driving down the road and all of a sudden I can’t figure out how to get to a restaurant. The kind of forgetful where you have to pull over because you know it won’t come to you and you refuse the help of gps because you’ve been there hundreds of times. You’re frustrated because you see you’re location and can picture the destination but it feels like your brain won’t work to connect how to get there. As if there’s a glitch and your brain won’t retrieve what it needs. I’m mad just talking about it.
- Death by food on many occasions. Usually something with a gritty texture, like bread. Skittles are a terrible culprit that I’m pretty sure has almost killed me multiple times and had my partner leaping over to bang on my back. Why? Because all of a sudden my body cannot swallow food. It just gets stuck until I cough enough to get rid of it. How can I choke on one tiny skittle so many times?
- A sneeze can possibly feel like a lightning strike down my spine. I would rather choke on a skittle than have that feeling when it comes and leaves me with a few moments of soreness.
I could go on about how at night the slightest bit of cold causes my toes or one finger to feel like it’s freezing and burning simultaneously or how for weeks at a time I will get a night-time exclusive itch in the same exact spot, often my lower abdomen, that I cannot satisfy. Where I break skin and leave broken skin because i can’t get deep enough and it’s relentless. The boom, after a few weeks the itch decides it’s no longer itchy.
The point is, I’m not here to be diagnosed. Honestly, some of these things could be downright normal. I understand that is what doctors are here for. However, if you made it this far you might understand why I am turning to you. Currently, I do not have the luxury to parade around town seeing doctors in order to find out what is wrong. I would love to hear your stories, your input, and your thoughts about whether you believe I am on the right track trying to find some peace in what is going on. Maybe you might even have another area to check that I haven’t thought about or maybe you have learned to work the health care system and can give me some pointers to speed things along. All help and input is appreciated!
So glad that wasn’t long at all,