Perseverance

Well a lot has happened since I last posted.  I still don’t have a diagnosis.  I was admitted to the hospital after I emailed the disease expert a photo of my knees.  I woke up one morning and they were both red and swollen looking- hot to the touch.  For several days after, they felt like the knees of a 90 year old- burning and achy.  That’s never happened before and I was worried that it meant I was about to flare up and potentially have another attack.

So the disease expert said to go to the hospital.  He was traveling but said his fellows would admit me, which they did.  I was there for 3 days while tons of doctors came into my room, asking me all sorts of questions.  And not once listening to my entire medical story.  I got poked and prodded and asked, “Can you feel this?  Is this sore?  Can you open your mouth and pull down your bottom lip?”  It was weird.

One doctor came into my room alone and I finally asked, “Can we talk off the record?”  He nodded yes.  I threw out my best guesses regarding what this could be, and he said, “It’s pointing in that direction.  But you need to be patient.”  Then they discharged me.

To be honest, all my labs look pretty good (heck they should.  I’ve always taken such great care of myself).  My ANA which indicates an auto-immune disease came back at 40 on the dot.  Usually if you have an AI disease, your numbers will be much higher.  Mine is the lowest score you can have to even test positive.

Other than that, the hospital hasn’t found much. They gave me a referral to a neurologist and she’s the big kahuna in the field of neuro diseases. In terms of a referral, you can’t be seen by anyone more experienced than her.  So we wait.  She can’t fit me in until the end of September. But I phone each day asking if there has been any cancellations.  My discharge orders said to be seen within 1-2 weeks.  So this isn’t ideal.  I need to see her sooner.

I reached out to another doctor and he ordered a bunch of brain MRI’s last Friday. I spent 1.5 hours laying in the tightest tube ever.  It was an older model machine and they didn’t even have headsets (just ear plugs).  At the last minute, that doctor ordered tons of extra views: specific nerves, optic nerves, brain stem and the entire brain itself.  I’m glad he did it, but it was really hard to be in that machine for so long.

My newest symptom is my heartbeat.  It’s racing for no reason and waking me up in the middle of the night.  So I saw my primary doctor yesterday (and btw-she blows as a doctor and this is completely above her pay scale-I need a better GP).  Anyways, I am now wearing a high tech heart monitoring device and she’s ordered another MRI, this time of my spine.

I’m hoping all of these tests will provide all the clues that the neurologist needs in order to make her diagnosis.  But I have a feeling, there will be more tests which she orders.

I’ve lost a shitload of weight.  All my shorts and jeans are baggy on me.  I bought a new pair of jeans and shorts as an interim measure.  I don’t like being this thin and want my more fit looking body back.  But the scary thing is, I fit into skinny leg 26″ jeans and a size 0 short.  I’m pretty certain I’ve never this thin.  And that scares me because if I endure another attack, I can’t see my body doing well by losing another 15 lbs.  I’m pushing food into me all day long but it’s like my body keeps losing weight.  It’s as if whatever disease this is affects your metabolic rate.

Please continue to keep me in your prayers.  It’s been the hardest two months of my life.

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9 thoughts on “Perseverance

    1. Despite how things should work, I’ve gone to various hospitals 5 times now and the result is always the same. They run some tests. Can’t find anything and discharge you to follow up with specialists. When it comes to rheumatology or neuro diseases, you are basically diagnosed over several months (out patient basis).

      My primary doctor said on average it takes 2-3 years to get a diagnosis for one disease we are looking at. I was like, “No way will I go 2-3 years to get diagnosed. That is insane.”

      I’m getting another MRI tomorrow. Fingers crossed it comes back clear.

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  1. Ask your doctors to test you for Lyme Disease. It’s an autoimmune disease, and it attacks your joints, especially the knees. I have it and out of nowhere I was so sick, fatigued, achy, knees swollen and could barely walk, hands and feet numb, tremor in my right hand, memory loss, speech issues. Thought I was losing my mind. It ended up being Lyme disease. No idea I had even been bitten by a tick. It’s worth the blood test. Hope you feel better.

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    1. Yeah they already did and it came back neg. Same w/Vitamin B12 deficiency & a heavy metals panel- all neg.

      My potassium came back a smidge low which they supplemented me for while admitted. I think that was due to excess water consumption when I had a dry mouth for 2 weeks.

      There’s only been a few outliers: my uric acid came back 2.6, then rechecked and it was normal, then rechecked at it was 2.1 (in and of itself, it doesn’t point to anything).

      Next my cryoglobulins came back abnormal. And now my C3 is low. They reordered both, but with a full immune panel this time. They also ordered an anticardiolipin panel IgG/IgA/IgM which checks for lupus. I don’t think that is what I have but we’ll be able to cross that off the list. For lupus, usually it’s diagnosed w/that test plus confirmed low c4. Mine is normal.

      All I can say at this point is my C3 is low….which points to something involving my immune system. And it’s been fighting it long enough to reduce my C4, which is part of the complement cascade system- specifically the alternate pathway. It only gets triggered when it’s fighting something and it works like a chain of dominoes (hence the cascade name).

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  2. Wow you have been stuck in some kind of medical limbo. Totally insane. I can understand your frustration with your GP and many of the specialists. My wife is a family doc who works for a large organization. It’s all about the numbers. She went into medicine to help people but barely has time to do so. She has to see so many patients in a day. There isn’t time to sit down and go in detail through a difficult case. If she does that then she must short change not one but three other patients. It’s totally ridiculous. She’s nearly burnt out after only a few years. I can’t even imagine how complicated your case is or how any GP has time to really analyze it.

    I can’t speak for the specialists but it sounds like you’ve had the run around there as well. Are they all just going off of statistics rather than actual people? Being a data guy myself it really scares me to think I might need a medical diagnosis for something that falls on the lower side of chance. For example if it’s a 70% chance it’s one thing, but you fall in the 30%. For you it’s 100%! Not 30. Scares me to think about.

    Take care of yourself. Really hope this has a happy ending for you. Really proud of what you’ve done so far. You’re quite inspiring.

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    1. I knew day 1 that I would spend a thousand times more time on my case, than any one specialist. No offense to primary care doctors, but they come in and spend minutes with you. I knew this was way over my GP’s head when she referred me to a podiatrist after I complained of pins and needles in my foot.

      My case is far more complex. When I visited the top rheumatologists and MS doctor, I spent an hour just going through my entire medical saga. It’s complex. Some of my symptoms don’t match to the rare disease my grandmother died from. So I’ve had to present 2 possible theories: I have a primary auto-immune disease + a secondary one causing the outlier symptoms. Or, the doctors don’t know jack shit and this is how the disease manifests in my body. As one top rheumy would later share with me, “It’s like every patient has their own individual disease. That’s how it sounds from a doctors perspective, even when patients have identical labs they describe it so differently.”

      The current labs aren’t effective. They only detect it 70% for one test. The other test only detects it 40% of the time. And the other 2 antigen tests only show up once you are full blown. It’s a very difficult disease to catch, early on.

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