ME/CFS Test? Can you raise your legs when lying down?

[Gingergrrl]

@Sushi what does engaging the Abs mean?

 

[Sushi]

what does engaging the Abs mean?

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.

 

[Gingergrrl]

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!

 

[Groggy Doggy]

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

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 don't exercise, don't do sit ups or anything to strenghen my core muscles (or any muscles). I am both overweight and out of shape.

 

[Gingergrrl]

How strange and I've seen chiropractor and naturopath in the past but they never had me do that either!

 

[Groggy Doggy]

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!

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?)

 

[Gingergrrl]

I don't have a diagnosis of CFS in my chart with any doctor except at OMI. Not b/c of stigma or any reason except that each doctor has written their own ideas so my cardio writes POTS/dysautonomia, my mast cell doc writes MCAS, Endo writes Hashimotos etc.

I am going to ask the group that I belong to who all have the calcium autoantibody that I have if they can do this leg exercise. Am so curious now.

 

[TigerLilea]

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.

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.

 

[valentinelynx]

@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)!

Not an expert by any means. However, if you have global muscular weakness I would expect that all muscles could be affected, including the diaphragm and the chest wall muscles. You would need a neurologist to evaluate which of your muscles are affected specifically.

 

[valentinelynx]

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. 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.

 

[Gingergrrl]

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.

Yes! I've been asked to do these kinds of tests repeatedly by all types of doctors, not just neuros. I am seated in my wheelchair and am asked to press against their hands with different parts of my body. I am able to do all of these tests and they always show a weakened response in my right arm (which was injured by Levaquin in 2010) but they report my leg muscles are "normal". They say I have reduced stamina so I can do these movements a few times but cannot sustain them. But the leg lifts while lying on back, I've never been asked to do.

Am curious (just in my own case) if I cannot do them b/c my core muscles are so weak from almost two years of using a wheelchair vs. a neurological problem? I will not see my Neuro until after I have done at least three IVIG treatments but I definitely intend to ask her this question. Thanks to everyone for posing this question and for all of the feedback, this was a great thread that really opened my eyes.

 

[anciendaze]

@Gingergrrl,

You already know you have antibodies to N-type calcium channels, which are needed at every neuromuscular junction. You just don't have the high levels that would qualify as LEMS. There are three other known ways neuromuscular junctions can be impaired. Considering the range of autoimmune problems you already know about I think the next thing to check would be antibodies to muscarinic acetylcholine receptors, which are needed on the presynaptic side of neuromuscular junctions. Unfortunately, tests for these are not standard clinical tests, though there are researchers using them. Maybe OMI can have them run.

In general doctors use antibody levels as a kind of diagnostic tripwire. If you have high levels of this you have myasthenia gravis; if you have high levels of that you have LEMS. 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.

Problems with muscarinic acetylcholine receptors are not trivial. Three examples which come to mind are: atropine/belladonna in deadly nightshade, toxins in amanita mushrooms like the fly agaric, toxins from the black mambo snake.

The big question is why we are just now getting around to wondering what happens when your body starts manufacturing antibodies with similar actions.

 

[Gingergrrl]

Unfortunately, tests for these are not standard clinical tests, though there are researchers using them. Maybe OMI can have them run.

Thanks @anciendaze and as far as I know, this test is only available as part of a research study in Germany and not through Mayo or anywhere in the U.S. I've tried to research it but it was a dead-end.

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.

I totally agree with you and I know this antibody means something larger and must be connected to my muscle weakness and breathing weakness. Maybe in 20 or 50 years this antibody will have an actual disease named after it, but for now, it is not given much meaning by doctors.

The big question is why we are just now getting around to wondering what happens when your body starts manufacturing antibodies with similar actions.

I wish I knew the answer! All I can think to do is continue the course that I am on with IVIG and later to try to get RTX. I am curious if lowering the antibody (in the long-run) would allow me to lift my legs on my own? 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.

If the IVIG allows me to improve my spirometry score or improve muscle strength, then there must be a connection with this antibody. I would love to know if the others in this thread who cannot lift their legs on their own (from the lying flat position) also test positive for these types of antibodies? But I know this will never be conducted in a study in my lifetime.

For whatever reason, all of these things that I cannot do make me feel very defective. My mind tells me, just try harder and you can do it (whether it's walking without wheelchair, lifting my legs, passing a breathing test, etc) but no amount of positive self-talk or encouragement makes a shred of difference. Your explanation is very helpful, I just wish I could do something about it and hoping my ideas re: IVIG and RTX are the right path b/c they are my only ideas and want to stop the progression of muscle weakness which to me feels like it is way beyond deconditioning (although of course I am also very deconditioned.)

Thanks again and that was very helpful.

 

[Groggy Doggy]

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.

Yes, I realize they are different tests. But, I don't notice any difference in my performance level to complete any of the tests; they are all easy. This may to due to a 35 year investment in visiting a chiropractor, on a regular basis? I am just glad that I can do something, because there are so many things that I can no longer do (difficulty completing tasks that require energy (metabolism) and thinking (cognition)).

 

[anciendaze]

...
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...

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.

I may have also been overly narrow by talking about neuromuscular junctions, though these could certainly cause the kind of problems you experience. From an evolutionary standpoint neuromuscular junctions are very old. A nervous system which can decide "This is it, I'm about to die!" without being able to change matters wouldn't be very useful, and hormonal changes just aren't fast enough to prevent most cases of predation.

The complementary pairs of pre-synaptic and post-synaptic acetylcholine receptors at neuromuscular junctions also have a parallel in the distribution of cholinergic nerves that serve neuromuscular junctions. Typically, you find nicotinic acetylcholine receptors on the post-ganglionic side, and muscarinic acetylcholine receptors on the pre-ganglionic side. Defects in transmission there can stop signals from ever reaching neuromuscular junctions.

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.

 

[Sushi]

I think the next thing to check would be antibodies to muscarinic acetylcholine receptors,

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.

 

[Dechi]

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.

 

[Gingergrrl]

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.

Thanks and this is my feeling too and that of my doctors. My initial improvements from one infusion of IVIG exceeded their expectations and mine. Am hoping and praying that additional infusions continue this trend.

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.

My feeling from the doctors and my own research is that even if we don't know exactly which auto-antibodies someone has is that certain interventions like IVIG can still be helpful. I agree it is non-specific in regard to autoantibodies but can be used for all (or most?) of them.

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.

I am starting to agree that some of the signals from my brain are not making it to the neuromuscular junctions but this thread and the leg test reinforced it to me.

This should be subject to objective tests, but I can certainly say that if nobody does such tests they won't find anything.

Agreed.

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.

The test that I want seems to only be available in that study in Germany vs. the tests for myasthenic syndromes and MuSK etc, which are available here and I am negative on all of them. I have the link bookmarked somewhere but of course I cannot find it! Will keep looking.

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.

Is there anyone in this thread who uses a wheelchair who can do this test? I am just curious and know the answers are random and not medical or diagnostic advise.

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.

Thanks for explaining b/c it had made me wonder, if this was a test for ME, then I definitely cannot pass it and it means that I do have ME versus if it is not a test for ME and is measuring something else.

 

[Sushi]

@Gingergrrl You mentioned that your husband could raise up your legs. Once they are vertical, are you able to hold them in that position? That would take much less ab strength and might be interesting to test.

 

[Gingergrrl]

@Sushi, I found the link I was looking for re: the test that I thought was only available in Germany (re: the autoantibodies that @anciendaze was mentioning to me).

Here it is:
http://www.celltrend.de/newsreader/...yndrome-myalgic-encephalomyelitis-cfs-me.html

I often get confused with all of the different tests at different labs with slightly different names. Do you (or anyone?) know if this test in the link is available in the US and if it would relate to what @anciendaze was mentioning or to this leg lift test?