Help understanding my latest blood tests

[LisaH]

I spoke to Heather in neurology again a few minutes ago. Not only is the neurologist not in today... he's on vacation all next week. That explains a lot. If my VGKC result (which she still says is back and has been reviewed) was negative, he could've told me that much before heading out the door.

[jimmylegs]

arg what fun :S if it's any consolation, along the lines of misery loves company or whatever, i've had nothing useful come of my trip to emerg and follow up mri. not even in to see the gp until next week. i feel like i'd be in exactly the same condition then, that i was on march 10 - if it wasn't for taking matters into my own hands!!

[LisaH]

Sorry to hear about your frustration but at least I'm not alone!

[LisaH]

I'm still waiting for the results of the paraneoplastic panel and it has been 24 days! I've spoken to the neurology department several times about this test and have been told that it's still "active and processing". This blood panel looks for cancer antibodies, so I've been on edge waiting for the results. The Mayo Clinic website says "Paraneoplastic syndromes of the nervous system occur when cancer-fighting agents of the immune system also attack parts of the brain, spinal cord, peripheral nerves or muscle. Depending on where the nervous system is affected, paraneoplastic syndromes can cause problems with muscle movement or coordination, sensory perception, memory or thinking skills, or even sleep. Sometimes the injury to the nervous system is reversible with therapy directed toward the cancer and the immune system. However, these diseases can also rapidly result in severe damage to the nervous system that can't be reversed." I'm hoping that this neurologist is just trying to rule out possible causes of my symptoms and that I most likely won't test positive for cancer antibodies.

[LisaH]

It has now been 40 days since my blood was drawn and still no result for the paraneoplastic panel. My last update from the neurologist was on the 17th and he said "Still says it's in process. Will let you know". According to what I've read, this type of blood panel shouldn't take nearly this long. If the tests are negative (meaning no antibodies), the result typically comes back in about 10 days. If it shows positive for one or more antibodies, it takes about a week longer for results because they have to do confirmatory testing. I would really like to know if I have cancer antibodies (or not) so we can move on to the next step.

[jimmylegs]

!?! frustrating...

[LisaH]

It has now been 43 days and still no results for the paraneoplastic panel. I had a follow-up visit with my regular neurologist today and had new symptoms to report. First... I had a terrifying incident day before yesterday. I woke up with a strong urge to urinate and proceeded to get out of bed. I have to hold onto the bed and wall now to steady myself because my legs quite unpredictable these days. I made my way toward the bathroom and halfway there my legs got so weak they were literally buckling under me. The rest of my body followed suit and by the time I reached the hallway, I fell sideways and hit my head on the frame of the bathroom door, then went down into the floor. I was so weak that I lay there for 20 minutes unable to move. I felt nauseous and light-headed. After it passed, I was able to get up and about again but felt weak the rest of the day. My neurologist thinks my blood pressure dropped very low (most likely orthostatic hypotension she says). I've had similar incidents in the past few months but this one was much worse. Second... I've been having shock-like pains in my legs for the past week or so, mostly my right thigh. It only lasts a second or two but it's quite intense. I'm still thinking I might have MS and now I'm wondering about the possibility of PPMS. A lot of my symptoms fit MS and have been progressing with no remissions. I think the neuromuscular specialist might be considering it and is trying to rule out other possible causes. I'm hanging in limbo right now because no other tests can happen until all of my lab results are back.

[NHE]

It has now been 43 days and still no results for the paraneoplastic panel.

Six weeks for test results seems a bit excessive. Are they getting sent cross country by covered wagon?

[LisaH]

I've wondered that myself, NHE. I had a follow-up visit yesterday with the neurologist. The nurse I spoke to on the phone told me that my paraneoplastic panel results were normal but he was concerned about the "spell" I had on Monday. After my check-in with a nurse, the doctor came in and said my labs looked good.. except for the paraneoplastic which isn't back yet. I was stunned! He's going to look into what's taking so long and why I was told the results were back when they weren't. He ordered thyroid and metabolic panel and suggested the possibility of periodic paralysis. He said it might still be close enough to what happened Monday to still show up in my blood. He's still thinking mitochondrial disease is also possible. I ended up having an EKG before leaving. He wants to repeat my EMG/NCV and possibly do a muscle biopsy and sleep study. The thyroid and metabolic came back today and are normal. The EKG appeared normal but a cardiologist has to go over it before we know for sure. I'm only a year and a half into this medical nightmare and it feels like a decade already.

[LisaH]

Well... after asking the neurologist (twice) to call the lab to see what's taking so long, he replied with this: "The paper copy of your paraneoplastic panel was faxed to me: normal". That seems odd to me considering all of my other test results (even send outs) have come back to the patient portal for me to see. What lab doing a cancer antibody test would have to fax a copy to the doctor? I'm relieved that no antibodies were found because the next step would have been to search for an "occult tumor" that's probably still too small to see. My thyroid and basic metabolic panel are normal so that's good news. I asked him if that ruled out the periodical paralysis or the other theories he has and he said: "Nothing is eliminated yet, was just hoping that an abnormal lab might give us a clue". I'm guessing his next step will be a muscle biopsy for mitochondrial disease because in his notes from yesterday's appointment he says: " consider muscle biopsy if workup remains negative" and "Repeat EMG / NCV specifically looking for myotonia".

This is so exhausting and frustrating.

[NHE]

Forgive me if you've mentioned it before, but what were your B12 test results? Did you get red blood cell folate, homocysteine and methylmalonic acid checked as well?

[LisaH]

My latest B12 was 345 which this neurologist considered fine and not the cause of my symptoms. He didn't check the others you mentioned.

[jimmylegs]

345 what? that's below minimum target, whether in pmol/l or pg/ml
b12 is for me the original case for a nutrient whose normal range dose not preclude a problem.
for at least 10 yrs i have considered min 500 pg/ml (370 pmol) more suitable than 200pm/ml which is the lower end of normal.
i personally go for 500 pmol/l (677 pg/ml) to leave a nice buffer.
i think i paid for MMA once in 2006 - then realized after i paid (but before the result came in) that it wasn't even applicable in my case :S lol lesson learned

[LisaH]

The lab's reference range given for B12 was 200-900 so the neurologist thinks my 345 is not the cause of my symptoms.

[NHE]

The lab's reference range given for B12 was 200-900 so the neurologist thinks my 345 is not the cause of my symptoms.

There's a fine example of JL's reply regarding "normal" ranges. 200 is deficient. In my experience, any B12 level between 250 and 500 pg/mL represents a gray area where other factors, such as symptoms, need to be taken into account for a correct diagnosis.

He didn't check the others you mentioned.

Homocysteine and methylmalonic acid are two biomarkers that indicate how well your body is utilizing the B12 you do have. Homocysteine is a cardiotoxic amino acid that builds up when either B12, folate, or B6 is low. That's why folate needs to be checked (the RBC folate test is better than serum folate as it gives a better analysis of long term folate status and is less sensitive to daily dietary influences). Elevated methylmalonic acid (MMA) is thought to be more specific to B12 deficiency. However, my MMA levels were fine, but my B12 and RBC folate were both deficient and my homocysteine was elevated (indeed, the hospital's EKG machine indicated that I had had a heart attack, but it was the cardiotoxic homocysteine causing an irregular pulse). With MMA, false negative tests are possible if one is taking or has recently been using antibiotics.

You may be interested in reading the following topic for more information on B12.

http://www.thisisms.com/forum/natural-a ... 24857.html