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Adam Israel
It’s never Lupus. 
20th-Apr-2010 10:50 pm
my sky

Earlier this month I mentioned that I was heading in for some long overdue checkup with the doctor. Many of you have been following my progress on Twitter. I’m a firm believer in paying it forward and that includes being open and honest about sensitive topics. Forewarned is forearmed.

I went to my primary care physician (PCP) on Monday to have a few persistent issues looked at. What started as a simple checkup turned into a week long ordeal in which I was poked, prodded, and gently cupped by the warm hands of two upstanding gentleman.

The first issue was a lump on my right testicle, now affectionally know as the double-yolk. It has been there for fifteen years or so. I saw a Urologist when it was first discovered and he deemed it benign. When I noticed blood in my ejaculate recently, I knew it was time to get it looked at again. Gentlemen, be sure to perform regular self-exams.

The second issue was for continued, persistent nerve pain. It started with a bang last July and was diagnosed as a pinched nerve in my shoulder by an ER doctor. That pain comes and goes, but the nerve pain has spread across my upper back, lower back, and from my hips to my knees. Additionally, I have some confirmed but not identified nerve damage causing the left side of my left foot to be numb. A history of balance issues and ringing in the ears going on two years now, both concentrated on the left side of my body, with chronic nerve pain, sets off some red flags.

Additionally, I’ve been having issues with temperature control. For a several weeks my normally warm feet were freezing. I took to wearing socks around the house, even if I was wearing shorts. I was also breaking out into a sweat just sitting and watching TV, no exertion required. The doctor was concerned that something autoimmune was at foot.

I peed in a cup, gave up a few vials of precious blood and got referrals for a Urologist and Neurologist. On my last appointment, my PCP told me to make an appointment with a Neurologist but the one I wanted to see was booked solid for two months. I called him late Monday morning and lucked into an open spot the next day.

Tuesday morning I head to court to find out how much of my ex-wife’s lawyer I have to pay. There end up being scheduling issues and the hearing is postponed til next month. From there I head to the Neurologist, Dr. Echiverri. He looks over the medical records I brought with me, tested my reflexes and eyes and listened to my symptom history. This is where things get interesting.

Four years ago I went through a period of six or nine months where I randomly lost my balance, but only to the left side. My doctor at the time suggested a handful of possibilities, including allergies and Multiple Sclerosis (MS). After lots of trial and error with allergy medicine, my balance improved. The doctor chalked this up to successful treatment and sent me on my merry way. For my part, I was just happy that I wasn’t listing like the Titanic.

Dr. Echiverri stopped me and said that I should have an MRI as soon as I had balance issues without dizziness. He agreed that there was some concern about the possibility of MS and literally escorted me to the scheduling department and told them to get me in that day. Ninety minutes later I was a human tampon wedged into an electromagnetic vagina.

Wednesday I went to the Urologist, who agreed that the lump doesn’t seem to be an immediate concern and that the blood I saw can happen occasionally. Because of my family history of kidney problems and my Diabetes, he ordered some tests.

I had an ultrasound and X-ray of my kidneys Thursday morning, and on the fifth day I rested.

Yesterday I called my primary doctor to check on the results of my blood work and ask them to fax me a copy. An hour or so later I get a call back from his nurse, a very nice lady named Cookie. Whenever a nurse starts off a conversation with “Now don’t panic when you read this” you know your day is about to take a left turn. The “Anachoice (R) Screen” and “RNP Antibody” tests came back positive. From the diagnostics lab:

RNP antibody is found in patiences with mixed connective tissue disease in high titer. This antibody may also be seen in systemic lupus erythematosus and other connective tissue diseases. A positive result at this stage of testing stops further testing, and does not preclude additional positive antibodies. Clinical correlation is required to access the need for testing other analytes.

The first time I read this I stopped when I saw Lupus. Some armchair research shows that these positive tests can also be an indicator for MS. So now I have an appointment with Rheumatologists, who will continue the diagnose why my body is being emo, and a follow-up with the Neurologist to see what my brain looks like. I have to wait a month for both appointments, though.

This morning, I went to the Cardiac Clinic for a nuclear stress test. The nurse injected me with saline and a tracer, ran me through a machine to take pictures of my heart, forced me to hustle on a treadmill at needlepoint while injecting more tracer and stuck me back into the machine.

As they were explaining the procedure to me, I asked how long the radioactive dye would stay in my system. I was planning to head home to Canada afterwards. I got a wide-eyed stare, and she called the nurse who would make my roll for gaining a superpower. She told me that Friday would be the earliest I should go. The radioactive tracer is externally detectable and she had a patient that was stopped and had their truck torn apart, including the seats removed, at the border and that with a note from the clinic detailing the procedure and elements used.

Look — crossing the border is already a stressful experience. The very last thing I want to do is trip someone’s geiger counter and get flagged as suspicious or turned away. As eager as I am to get home and see my better half, our pets, John, and Mom R., I want to do so with the least chance of being jellyfingered by a burly guard.

A lot of things are running through my mind these days. I am blessed that none of my symptoms point to anything immediately life threatening. Still, it does make one reevaluate their priorities in life. I’ve already spent weeks apart from my loved ones this year with more on the horizon, and too much of the time we have spent together has found me wasting time online. Priorities need to be adjusted from time to time and this is one of them.

I’m cutting out games that can’t simply be put down or away. If I can’t logout and pick back up where I left off another time, I’m sorry but we can no longer see each other. I’m going to force myself to get away from the laptop every day. Andrea and I will walk the dogs or go to the park; disconnecting will be good for us. It’ll help me focus on losing the excess weight that, while not the cause of all of my problems, certainly doesn’t help them.

One of my friends asked if this was going to impact my plans of going to Clarion this summer and I didn’t have an immediate answer to that. Clarion is a unique opportunity. One thing I’ve asked myself is if I could put it off a year. Sure, it’s possible, but next years instructors might not be ones that I feel a connection with. Or work might be different, living situations changed, etc. Putting it off is a slippery slope that can lead to a lifetime of regret. I guess the long answer is no, this is’t going to impact my going to Clarion.

I have very few answers to the medical puzzle that is my body. I should have more test results this week, and several follow-up appointments next month. I don’t know if I have MS or Lupus (Dr. House says that it’s never Lupus) or something else unconsidered. I’d rather know what is causing this rather than treating symptoms at random and I think I finally have the right doctors for that.

My tribe is awesome. The outpouring of support has been overwhelming. If you’ve tweeted or emailed me, thank you. I’ve often felt like an outsider in this wonderful extended family of ours but this week has shown me that is not the case.

[Crossposted from Adam Israel. If you'd like to comment, you can do so either here or there.]

Comments 
21st-Apr-2010 03:29 am (UTC)
Sorry; I'm not following you on twitter so I had no idea.

If a fellow Mysterious Disease Person can be of any help or a listening ear, please drop me a line at my first name at geemail etc.

I agree with you: if at all possible, do NOT postpone Clarion.
21st-Apr-2010 01:05 pm (UTC)
::sending hugs::

(I don't have any good recommendations, so all I can do is sympathize.)
21st-Apr-2010 04:58 pm (UTC)
Knowing something is wrong, but as of yet the doctors haven't figured out what, is frustrating. But it does sound you have a good bunch of doctors who what to figure out what the main problem is, so they can work on fixing it.
27th-Apr-2010 04:06 pm (UTC)
Adam, I hate that you're having to deal with this kind of thing, but I'm glad you have doctors who seem to be taking it seriously. Take care, and I really hope that you manage to get to Clarion in spite of this.
3rd-May-2010 07:38 pm (UTC)
Hey Adam, I'm glad we've connected on LJ in addition to twitter. I saw lots of tweets but didn't know the details, so thanks for spilling all the details. I wish you all the best, I'm sending you lots of positive vibes, (uh, ya, NO WAY you can miss Clarion, btw!)and keep us posted!
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