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

[Sushi]

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

Yes, those should be available in the US. I remember people posting about them and I've read about them here. Or, you could send your blood to Germany.

 

[Gingergrrl]

@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.

@Sushi, Great question and we just tried it except lying on bathroom floor so hard surface vs. on bed. My husband lifted each leg separately (which I also cannot do) but as soon as he lets go of the leg, it falls to the floor. I cannot hold it in a raised position for even one second on my own. I was shocked and am not sure what this means. My legs were never vertical and were just a few inches off of the floor (once he lifts them to that position) but I cannot keep them there no matter how hard I try. This really bothers me but I guess I have to let it go.

 

[Sushi]

My legs were never vertical and were just a few inches off of the floor (once he lifts them to that position) but I cannot keep them there no matter how hard I try.

Vertical is much, much easier. The closer to the floor, the harder it is.

 

[Gingergrrl]

Vertical is much, much easier. The closer to the floor, the harder it is.

Thank you for clarifying and we tried it again and when my legs were completely vertical, I could keep them there on my own with no problems!!! Am so happy that I can finally do something. You made my day .

 

[anciendaze]

Just to contribute a little more to this topic, I want to mention that the various problems with antibodies to specific receptors or ion channels go along with exaggerated responses to some common medications. @Gingergrrl had a really bad response to calcium channel blockers, plus an IV containing magnesium, and (surprise, surprise), has antibodies to N-type calcium channels. She is also not the first person I've heard from with an exaggerated response to beta blockers, which would suggest antibodies to beta adrenergic receptors.

The hypothesis that cholinergic nerves carrying signals to muscles are being blocked before these reach neuromuscular junctions would tally with exaggerated response to medications which directly affect acetylcholine receptors, and I have a proposed suspect.

Many people have exaggerated responses to diphenhydramine, an over-the-counter medication (Benadryl, Dramamine, Nytol), normally considered quite safe. While this is primarily considered an antihistamine, I would point out that it is also antagonist for all classes of muscarinic acetylcholine receptors. I'm wondering if the people with the kind of limitation Gingergrrl describes also have exaggerated responses to diphenhydramine. This is what I would expect if they had antibodies to muscarinic acetylcholine receptors.

 

[Gingergrrl]

Just to contribute a little more to this topic, I want to mention that the various problems with antibodies to specific receptors or ion channels go along with exaggerated responses to some common medications. @Gingergrrl had a really bad response to calcium channel blockers, plus an IV containing magnesium, and (surprise, surprise), has antibodies to N-type calcium channels.

Please add anything you like and it is all very helpful to me and I have no doubt to others, too. You are exactly correct that I had a horrific response to a calcium channel blocker in 2014 and also to IV magnesium (also in 2014.) At that time I had no clue that I had this antibody or even that such an antibody existed.

She is also not the first person I've heard from with an exaggerated response to beta blockers, which would suggest antibodies to beta adrenergic receptors.

I actually have done well with beta blockers for POTS and this is one of the meds I tolerate well.

'm wondering if the people with the kind of limitation Gingergrrl describes also have exaggerated responses to diphenhydramine. This is what I would expect if they had antibodies to muscarinic acetylcholine receptors.

However, I had a horrible reaction to Benadryl (diphenhydramine) and also to Mestinon which is when I realized that I do not do well with meds that affect acetylcholine in either direction. (I do very well, however, with other antihistamines such as Atarax or Zyrtec- whatever this means).

I would be very curious, as you inquired, if the people in this thread who cannot do the leg lifts have also had bad reactions to any of these meds (calcium channel blockers, benadryl, mestinon, high dose magnesium, etc.)

 

[zzz]

However, I had a horrible reaction to Benadryl (diphenhydramine) and also to Mestinon...

And of course to Valcyte as well, which like Mestinon, was able to trigger a cholinergic crisis in you. This ability of Valcyte (or even IV ganciclovir) to trigger a cholinergic crisis is apparently undocumented. This would appear to emphasize that you have an uncommon dysfunction with your muscarinic acetylcholine receptors, and would emphasize the importance of your next point:

...which is when I realized that I do not do well with meds that affect acetylcholine in either direction.

And this would strongly suggest the possibility of auto antibodies to the muscarinic acetylcholine receptors, which is why tests for such auto antibodies would seem to make a lot of sense in your case. However, the results of such tests probably wouldn't influence your treatment course, and for this reason, I don't think they're essential (unless, of course, your doctors think otherwise). In the absence of such tests, and with your history, I would be inclined to think that such auto antibodies are present.

(I do very well, however, with other antihistamines such as Atarax or Zyrtec- whatever this means).

As these antihistamines don't really affect the acetylcholine receptors (unlike Benadryl, which is both an anticholinergic and an antihistamine), this wouldn't seem to mean much, other than there do not appear to be any obvious problems with your histamine receptors.

 

[Gingergrrl]

This would appear to emphasize that you have an uncommon dysfunction with your muscarinic acetylcholine receptors

@zzz I agree based on my past reactions to meds and was curious if you think that the dysfunction with these receptors would relate to me not being able to do these leg lift exercises vs. it due to muscle de-conditioning from being in a wheelchair for two years?

And this would strongly suggest the possibility of auto antibodies to the muscarinic acetylcholine receptors, which is why tests for such auto antibodies would seem to make a lot of sense in your case. However, the results of such tests probably wouldn't influence your treatment course, and for this reason, I don't think they're essential (unless, of course, your doctors think otherwise). In the absence of such tests, and with your history, I would be inclined to think that such auto antibodies are present.

I've never spoken to my doctors re: this specific test and just remembered the link today. My instinct is that I would test positive but then what would it really change treatment-wise like you said? The goal would still be to attack and lower all of the auto-antibodies (those known and those unknown). My new Neuro had ideally wanted some kind of objective measure that IVIG is doing something positive and the first thing we both thought of is if it allows me to pass a spirometry test. But I also wonder if there are other tests of muscle strength, such as this leg lift test, that could be an objective measure? (The two main doctors involved with my IVIG are not asking for this but having a Neuro on board is huge for insurance purposes).

 

[anciendaze]

Concerning the hypothesis of antibodies to muscarinic acetylcholine receptors, so far I have clues, but nothing statistically significant. The leg lift was a problem for me. It just happens that I had exaggerated responses to diphenhydramine. At one point, when other medications were not allowing sleep, I was taking a recommended dose every night, and this would knock me out. I stopped taking it at night after a wild episode of tachycardia which left me lying in bed and wondering if my heart would hold together for about two hours. This turned out to be caused by a modest overdose, I woke up and forgot I had already taken it.

I know another person with an exaggerated response who is knocked out by half the recommended dose. Just asked her to try this leg lift, and she was surprised that she couldn't do it.

This is not a matter of general deconditioning because she walks several miles a day.

 

[Sushi]

I had exaggerated responses to diphenhydramine. At one point, when other medications were not allowing sleep, I was taking a recommended dose every night, and this would knock me out. I stopped taking it at night after a wild episode of tachycardia which left me lying in bed and wondering if my heart would hold together for about two hours.

Higher doses of diphenhydramine act as a sodium channel blocker I have read.

 

[Gingergrrl]

I know another person with an exaggerated response who is knocked out by half the recommended dose. Just asked her to try this leg lift, and she was surprised that she couldn't do it. This is not a matter of general deconditioning because she walks several miles a day.

Thank you and that is very interesting to learn. Does this person also know if they have any auto-antibodies? My response to Benadryl was not so much the sedation as that it caused me respiratory depression combined with agitation and what my doctor called an overall toxicity reaction. I have not taken it in over a year so no idea how I would react now but suspect it would be the same. I believe an isolated dose would be okay but ongoing Benadryl would quickly become toxic again.

 

[anciendaze]

@Gingergrrl

Very few people have any idea if they have autoantibodies affecting particular kinds of nerves. Even in the case of neuromuscular junctions we only test for antibodies to nicotinic acetylcholine receptors or MuSK after there is a strong suspicion of myasthenia gravis, based on traditional clinical signs. What is going on at the presynaptic side of the junction is almost a complete mystery for most doctors.

Meanwhile, back at a previous subject, my comment about an exaggerated response to beta blockers was not intended to mean you had an adverse response. Your tachycardia and high blood pressure were intended targets of the drug, and you responded. What was unusual was the extent to which this caused orthostatic hypotension. As I recall your bp went to 68/48 on a tilt-table test, which explains not being able to stand. You were then given a vasoconstrictor to raise bp. Your bp is better controlled, but you still use a wheelchair.

I've known other people who had trouble standing after being put on beta blockers, but none of these had tilt-table tests. In some cases they were put on a reduced dose. I'm hypothesizing that they already had autoantibodies to beta adrenergic receptors. Perhaps their body was trying to control the dangerously high bp episodes. We don't know which is the pathological process and which is the response.

 

[Gingergrrl]

What is going on at the presynaptic side of the junction is almost a complete mystery for most doctors.

I don't know which tests are pre and post synaptic side of the junction (no matter how hard I try to learn this stuff!) but is the test that I inquired about with the link in Germany one that is measuring the presynaptic side and therefore part of the mystery for doctors in the US? Or have I actually had that test and I don't know it?

Your tachycardia and high blood pressure were intended targets of the drug, and you responded.

I've never had high BP and the BB was initially for a diagnosis of IST ("inappropriate sinus tachycardia") which was later changed to a diagnosis of POTS. I took the BB for all of 2013 and during that year I worked full-time and even traveled on a belated honeymoon and had no trouble walking/breathing- just the tachycardia episodes. It was purely to try to control the tachycardia/POTS and for whatever reason, the pulmonary restriction/phrenic nerve and diaphragm neuropathy came in 2016. I do not know why and wish I did!!!

Your bp is better controlled, but you still use a wheelchair.

Yes you are correct and my BP has been higher since the IVIG but it has not changed my ability to walk without wheelchair (not that I expected it would from one infusion.) Otherwise it was staying on the low side even with Midodrine and when the Midodrine helped me breathe a little (even with BP in the 80's/50's) my doctors said it was due to "preferential perfusion" and getting more blood to my lungs.

But now with the antibody/neuropathy, am not even sure if this is accurate. But even in the instances where my BP stayed over 100/60, it never changed my ability to inhale a full breath (the lung/muscle restriction) and again I do not know why. At the end of 2014 I tried a period of going off of the BB completely (for a medical test) and then stayed off of it for about eight days but this also did not change my ability to breath (and sadly without it, the tachy was quickly back into the 160-170 range and unbearable) so I went back on it.

I've known other people who had trouble standing after being put on beta blockers, but none of these had tilt-table tests.

My second TTT (in 2016) showed no drop in BP, but it did capture "significant POTS." I was only off of the BB for one dose, so some was still in my system, which should have lowered my BP but it didn't. The TTT in 2014 though, you are correct, my BP did drop very low- around 68/48.

But since 2013 having tried different BB's, being on no BB, and briefly trying a CCB, none of these have changed my ability to inhale a full breath or to breathe while standing. It is maddening not to know why and the thing that has made the most improvement (even though short lived) was the one infusion of IVIG. Am hoping this info helps someone else down the line.

I also wanted to tell you but keep forgetting, that many of the people in my calcium channel group (a few with LEMS but almost all with just the antibody without LEMS) are a much closer match to my symptoms (re: breathing, using wheelchair, POTS, etc) than to most people that I speak with on PR. I am not sure what this means diagnostically (b/c it is such a small sample of people).

I just thought it was interesting b/c it is people worldwide with the calcium Ab, but with a vast variety of diagnoses and treatments, yet they are more similar to my situation. None of us have solved though why we have the antibody or what to do about it besides get the cancer screenings (which is what most doctors focus on when they see that antibody.)

Thank you again for your feedback on this. I tried the leg lift exercise again last night (have been practicing! ) and I can now lift each leg separately but still cannot lift them both together no matter how hard I try. I absolutely intend to ask my Neuro about this test but do not see her for quite a while.

 

[anciendaze]

I don't know which tests are pre and post synaptic side of the junction (no matter how hard I try to learn this stuff!) but is the test that I inquired about with the link in Germany one that is measuring the presynaptic side and therefore part of the mystery for doctors in the US? Or have I actually had that test and I don't know it?

Muscarinic acetylcholine receptors are on the presynaptic membrane of neuromuscular junctions, but are not limited to that location.

I've never had high BP and the BB was initially for a diagnosis of IST ("inappropriate sinus tachycardia") which was later changed to a diagnosis of POTS. I took the BB for all of 2013 and during that year I worked full-time and even traveled on a belated honeymoon and had no trouble walking/breathing- just the tachycardia episodes. It was purely to try to control the tachycardia/POTS and for whatever reason, the pulmonary restriction/phrenic nerve and diaphragm neuropathy came in 2016. I do not know why and wish I did!!!

My mistake. Most beta blockers are prescribed for hypertension. A drop in bp after beta blockers would be considered the intended effect.

Yes you are correct and my BP has been higher since the IVIG but it has not changed my ability to walk without wheelchair (not that I expected it would from one infusion.) Otherwise it was staying on the low side even with Midodrine and when the Midodrine helped me breathe a little (even with BP in the 80's/50's) my doctors said it was due to "preferential perfusion" and getting more blood to my lungs.

I do not know, but I am also pursuing ideas about perfusion, to other muscles as well as lungs. Normally, hypoxia in such muscles or organs triggers a cascade of signals which increases the flow of blood. This mechanism appears to be broken. One way in which this intersects with the extreme cases of periodic paralysis and episodic ataxia is via carbonic anhydrase. Both of those types of patients get some relief from carbonic anhydrase inhibitors. I can't recommend this without reservations in your case because you have antibodies to GAD65. Even though you do not have diabetes, you may have increased sensitivity to insulin. Metabolic activity associated with carbohydrate metabolism causes substantial changes in the flow of ions. This is a situation where treatment has to be carefully balanced to avoid causing new problems.

Anything which can get at the root cause would be preferable to trying to live life balancing on a unicycle.

 

[Gingergrrl]

Anything which can get at the root cause would be preferable to trying to live life balancing on a unicycle.

ITA for all of us and this is basically what I feel like I have been doing the last 3+ years and hoping it will soon stop. Thank you again for all of the feedback.

 

[RinkyInky]

My doctor asked me to do a similar thing. After I had raised my leg straight up I was told to hold it there for a while. After I lowered it I was told to do the next one and hold it straight up for a while.

Then he asked me to lift the first leg straight up again but this time he was holding it back/down just a few inches above the bed, using his own strength. I had to use the muscles quite a bit, as you can imagine.

Everything worked out fine and I did the same thing with my other leg. But then he asked me to raise the first leg again and he would try to hold it down once more. And I could not raise it! I had just done it but couldn't do it again.

Then he said: "Just as I thought, you have mitochondrial dysfunction." The beginning of my ME diagnosis.

This is interesting. Did he tell you why he made that conclusion?

Also, what did he recommend for mitochondrial dysfunction?

 

[Gingergrrl]

This is interesting. Did he tell you why he made that conclusion?

This is just a guess but with a Mito or certain neuromuscular disorders, you might be able to do something once but then have no stamina or endurance to continue it. Versus with LEMS, the more you do it, the easier it gets and muscles can get stronger. (I do not have LEMS but was tested for it based on an antibody that I have.)

So this leg test seems potentially very useful and I remain shocked that no doctor has ever asked me to do it, in any format.

I am also curious what was recommended for Mito dysfunction?

 

[Lindberg]

@RinkyInky @Gingergrrl

My doctor said that since the muscle in the thigh is so big it can give you a good hint about the energyproduction/mitochondrial work. The trick is to get the muscle exhausted/strained and then see if it can continue to work or not. He had been working with sport athletes so that was how he got interested in mitochondrial dysfunction in the first place.

I had recently begun taking Q10 and since I experienced great effect he encouraged me to keep taking them. He also mentioned beetroot juice as a great complement. The first time I tried it it gave great effect - seemed like the muscles had no boundaries. The next day I drank it I crashed... Now I know I can't tolerate beetroot or spinach - but I don't know why...

Other than that he liked the idea to go glutenfree, sugarfree and to eat as clean food as possible. Nothing new for you guys probably...

 

[RinkyInky]

@RinkyInky @Gingergrrl

My doctor said that since the muscle in the thigh is so big it can give you a good hint about the energyproduction/mitochondrial work. The trick is to get the muscle exhausted/strained and then see if it can continue to work or not. He had been working with sport athletes so that was how he got interested in mitochondrial dysfunction in the first place.

I had recently begun taking Q10 and since I experienced great effect he encouraged me to keep taking them. He also mentioned beetroot juice as a great complement. The first time I tried it it gave great effect - seemed like the muscles had no boundaries. The next day I drank it I crashed... Now I know I can't tolerate beetroot or spinach - but I don't know why...

Other than that he liked the idea to go glutenfree, sugarfree and to eat as clean food as possible. Nothing new for you guys probably...

Thanks for the reply!

I do think that I have mitochondrial issues and my 23andMe test shows mitochondrial mutations as well.

Is there a programme that he recommends for it or was it more like "experiment by yourself and find whatever works for you"?

Thanks again.

 

[Gingergrrl]

My doctor said that since the muscle in the thigh is so big it can give you a good hint about the energyproduction/mitochondrial work. The trick is to get the muscle exhausted/strained and then see if it can continue to work or not.

But what if your thigh muscle cannot lift your legs at all for even one rep? Or with this exercise, is it actually the thigh muscle versus the hips and core? In either case, I cannot do it but if someone lifts my legs to the vertical position, I can maintain it on my own.

I had recently begun taking Q10

I tried a very high quality expensive version of Q10 for about a year at 400 mg/day (or maybe even higher at one point) but it never made any difference for me, good or bad.

Other than that he liked the idea to go glutenfree, sugarfree and to eat as clean food as possible. Nothing new for you guys probably...

I've been gluten free for three years although I do eat sugar. For me the diet has been life-saving and non-optional for MCAS but I haven't found it to make a difference in other areas of my illness.

Is there a programme that he recommends for it or was it more like "experiment by yourself and find whatever works for you"?

I am curious about this as well when you have time to share more.