Gingergrrl
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@Sushi what does engaging the Abs mean?
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Basically, try to draw your belly button to your spine, and while holding that, pull in the corresponding area on the back side. Hold this dual contraction and then try to lift your legs. Note: it seems to be easier on a bed, harder on a surface like a carpet.what does engaging the Abs mean?
Thats odd because I have performed the test many times (both legs, single leg) while health care provider has pushed in both directions (and I push against the resistance). Same thing with my arms. From my recollection test was done by 2 neurologists, multiple chiropractors, and one naturopath.I've now seen three neuromuscular docs (two useless and one good one who is now my doctor) but none of them nor a single doctor in my life has ever asked me to perform that
I hope you can find a doctor that gives you a satisfactory answer. Its hard to say if its a nerve or a muscle issue or Spinal stenosis (nerve roots)? I am wondering if your neurologist could do an EMG to narrow down the issue? (just giggle a bit and say that the diagnosis of CFS, in your chart, must be a typo. maybe then you will be taken more seriously?)I cannot do any of that! My husband just tried lifting my legs and could do it but says they were "dead weight." I cannot even lift one leg up by itself let alone both legs. If I do each leg separate, I can lift the foot, but together, I cannot even lift the foot! I don't know why but knowing this is really freaking me out!
It makes sense that if you are reliant on a wheelchair that you would have problems trying to do this test. For those of us who are able to walk I imagine we wouldn't have a problem lifting our legs.He thought I cannot do it b/c my core strength is so weak vs. my legs being weak. But we don't know beyond that. I am not bedbound and use a motorized wheelchair throughout the apt and a portable one outside. But I cannot stand or walk more than 30 to 60 seconds. It must all be related.
@valentinelynx Would this test of core muscle strength (the leg lift test) ever correlate with lung or diaphragm strength? If I cannot pass a basic spirometry test and also cannot lift my legs for this test, are these two things related in your expert opinion (in general without giving medical advice of course)!
I have performed the test many times (both legs, single leg) while health care provider has pushed in both directions (and I push against the resistance). Same thing with my arms.
You are talking about a standard test of muscle strength. This is usually done with the patient in the sitting position, unless the patient can't sit.
Unfortunately, tests for these are not standard clinical tests, though there are researchers using them. Maybe OMI can have them run.
The default assumption seems to be that there is no interaction at all between receptors a few microns apart at the same neuromuscular junction. This is absurd, but it saves doctors from complicated reasoning.
The big question is why we are just now getting around to wondering what happens when your body starts manufacturing antibodies with similar actions.
You are talking about a standard test of muscle strength. This is usually done with the patient in the sitting position, unless the patient can't sit. You test whether the person can move the limb against gravity (lift), not against gravity (helping) and against pressure. Typically, you test moving the leg at the hip joint, moving the lower leg at the knee and the foot at the ankle. However, lifting both legs straight up without bending them while lying flat on your back is a very different test and much harder.
If an intervention is actually able to move the pathological state, even temporarily, that is an indication you are dealing with a cause of the problem. A single IVIG infusion probably won't make much difference, but a series of these should produce larger effects....
After my first IVIG, I was able to snap open and close a tupperware container for the first time but now that the effects have worn off, I can no longer do this no matter how hard I try. It's certainly possible it was random and not connected to the IVIG but it really makes me wonder...
These tests are also available in the US. I have read of many people getting them. The Dinet forum or Google would be good places to look.I think the next thing to check would be antibodies to muscarinic acetylcholine receptors,
If an intervention is actually able to move the pathological state, even temporarily, that is an indication you are dealing with a cause of the problem. A single IVIG infusion probably won't make much difference, but a series of these should produce larger effects.
One problem here is that we don't know which autoantibodies are responsible for your problems. As I recall you now have four detected. This is a pretty solid indication of autoimmune disease, and likely means there are still others. IVIG is very non-specific w.r.t. autoantibodies.
If I postulate that you have such defects, the idea that your neuromuscular junctions are only slightly affected, while doctors believe you "just aren't trying" would have a natural explanation. Some of the signals your brain is sending never reach those junctions.
This should be subject to objective tests, but I can certainly say that if nobody does such tests they won't find anything.
These tests are also available in the US. I have read of many people getting them. The Dinet forum or Google would be good places to look.
Lifting your legs like described takes good abdominal and core strenght. I would not expect someone who has been in a wheelchair or bed bound for a while to succeed. Let alone whily lying in bed. This needs to be done on a hard surface, not a soft bed.
I agree that this is not a test for ME in any way, unless done as to achieve the accumulation of lactic acid and muscle failure, which would not happen in 2-3 seconds, and one occurrence.