Can Antiphospholipid antibodies cause ALS?

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Searcher

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I have high levels of antiphospholipid antibodies (APS) and specialist says they can cause muscle problems. I am wondering if they can either cause ALS or mimic it. Are these routinely checked for in ALS diagnostic work-up? If not, why not? If not, how could researchers or neurologists conclude that APS cannot cause or mimic ALS? This matters, since APS specialist recently told me that a commonly used drug can reduce the antibody level, eventually to zero, and improve at least some symptoms.

Searcher

If one doesn't ask, one may never know or learn
 
Questions better asked of a doctor or researcher. What exactly is it you are looking for here? You seem to come up with a new question several times a day, before the last ones are even answered. For a guy named searcher you don't seem to have used the SEARCH feature here.

AL.
 
YOUR RIGHT AL


HENCE THE NAME" SEARCHER" LOL



PAT:mrgreen:
 
Questions better asked of a doctor or researcher. What exactly is it you are looking for here? You seem to come up with a new question several times a day, before the last ones are even answered. For a guy named searcher you don't seem to have used the SEARCH feature here.

AL.

Well, among other things, I'm looking for knowledge or experience of others to see if this might shed light on long-standing problems which now seem to be clearly progressing. I have a lot of questions because I've been dealing with this so long, without clear-cut answers, and I don't see some of them being asked or addressed. But I can search first before posting them. If I do turn out to have ALS, I am still looking (searching) for what might be causing it, if this is possible to know. Clearly, sometimes it is possible (or at least possible to know that something is simulating ALS). I don't come up with several questions a day; I've been accumulating them over a long time, thinking about possible connections. Is there something wrong with this? Asking questions is the way we get answers.

I'm also looking for similar experiences, to see how others have coped with these problems and offer whatever thoughts, insights or observations I can that might be helpful. I am very glad there is a forum for those who are concerned about ALS here, as there is obviously quite a need for something like this.

Does that answer your question?
 
Hi, Searcher ... don't really want to get into this topic, but when you ask about:
antiphospholipid antibodies (APS) and specialist says they can cause muscle problems. I am wondering if they can either cause ALS or mimic it. Are these routinely checked for in ALS diagnostic work-up? If not, why not? ...

Do you really think that any of us patients or caretakers know what the h**l antiphospholipid antibodies are, or whether neuros routinely check for them in work-ups ... and if they don't, why they don't? You're asking a bunch of ALS and other neuro patients and caretakers if these things cause ALS? Are you asking us because you think we know what causes ALS, but we don't want to tell anybody because then they might cure us and then what would we do for fun?

I envision myself at my next clinic visit, asking the doc, "Oh, by the way, have you checked my antiphospholipid antibodies lately? No ? Well why not ? There's this guy on the Internet who thinks you should." (Actually, it would be kinda fun to try to say "antiphospholipid" with my disarthria, just to see the expression on his face.)

What I'm trying to say is that most of us have no medical background (some do). Research on the subject of ALS obviously fascinates you, which is fine ... I, myself, am into animal rescue and yoga ... but I don't think you're going to get much of a dialog on these issues at a support group, where people are looking for emotional support and feedback and information they can use in their daily lives.

This doesn't make you a bad person :) . Do you abuse animals? That makes you a bad person.
 
Beth,

I don't expect that people on such a forum would know if Antiphospholipid antibodies cause ALS, but with the combined experience maybe somone has been told, heard, read or otherwise learned something related to this. As to whether something like this is tested for in ALS work up, I would guess that some who have ALS would know what things were checked and tested for in th work up to arrive at the diagnosis. Even if not, I would expect that some would have their medical records with this information.

I'm a bit surprised by your reaction, since you wrote about your positive reaction to Mestinon. I would think that you would also be interested, based on that, about what might cause or mimic ALS. On some ALS forums people are interested in issues about the possible causes, mimics or treatments for ALS. if no one here is interested in this then I'll stop asking such questions here. I would guess, however, that on the forum for those concerned that they might have ALS, some would indeed be interested in what else might be causing their symptoms.

Searcher
 
Beth....

The very thought of pronouncing that word even without any impairment is entertaining! I for one believe that anything we can stumble across as lay people, has definitely been examined by ALS research. If we know about it, they knew about it first.

I responded to Searcher in another of his/her posts, when he/she asked if doctors used diagnostic tools such as lip biopsies of salivary glands to rule out or discover if Sjögren's was the cause. (and my response was yes, absolutely!)

Some come to this forum with brand new symptoms, and others, probably most, stumble across it after they've been going down the diagnostic road for a bit. One of the key things that you pointed out is that this IS a support forum. We have varying degrees of experience with our collective illnesses, rather than degrees in neurlology. So I think you showed good insight in pointing this out. It may be that other forums have members that are more into the analytical side of these groups of illnesses and symptoms. More of a "think tank" type of atmosphere, but the bottom line is that if there was a known cause for ALS, or a known treatment, we'd be the ones learning about it, not discovering it.

BTW, the last time I spoke with my laryngologist, she said she thought that at this point, yoga would be as helpful as any other treatment or medication for me. :)

Searcher, I don't think it is a problem that you raise these questions, but you've got quite a few different theories out for consideration in short order. There are going to be those that find they are more interested in delving into it than others. It may be you would get more feedback if you posted it on the "Research" News Forum...
 
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Searcher

APS is actually a syndrome: antiphospholipid syndrome and is due to autoantibodies directed primarily against cell membranes (the cell membrane is the "skin" of our cells). These autoantibodies preferentially attack a certain protein in the cell membranes of platelets (platelets are involved in the clotting mechanism) . . . and as a consequence . . . the most prevalent symptom of APS is blood clots. It would be rare for you to be diagnosed with APS and not have blood clots.

APS is obviously an autoimmune disorder and many times people with APS have some other type of autoimmune disorder as well. I have read a few of your posts and see that you have had symptoms for over 25 years . . . and symptoms that wax and wane. That simply isn't how ALS typically presents. It is certainly how many autoimmune disorders present, however.

You ask if APS can develop into ALS: given the etiology of APS, I would have to say no . . . but then again . . . no one knows how and why ALS develops (except for the familial form of the disease). Your physician was correct in that this disorder can affect skeletal muscle as well but the signs and symptoms would resemble something more on the lines of a myopathy. The autoantibodies of APS can also be directed against mitochondria and so signs and symptoms could resemble mitochondrial disease.

If your present symptoms are related to your past symptoms, then I would not suspect ALS, given how ALS is a progressive disease and you simply have not been progressing. My money would be on something autoimmune.

If your present symptoms are not related to your past symptoms, then anything is possible. What I would suggest is go to a neuro and get a full evaluation (including an EMG) so they can determine if you have any type of neurological problem. Until you do that, you and I and everyone else would be able to do nothing but speculate.
 
Wright,


You put that very well. I don't quite understand all of it, but that's me, not you. :)

I'd been thinking about this, as I'd gotten involved responding to Searchers questions due to my own experience with prednisone and plaquenil, etc. And your summary at the end was what I thought too.

Sometimes we try to link everything together, and its hard not to, because how do we really know when a new condition starts? They say that even with the common cold, or the flu, we've already got it by time we think we might be coming down with something.

This is what made me wonder if the new stuff is actually connected to the old stuff.

Searcher,

From what you wrote (in your response to me in another thread) it sounds like you're not actually taking the Plaquenil yet. It will take a while to see if you respond to it, and conversely (I was told) it will take about two months to get back out of the system once someone has been on it a while and then stops it.

I just think that you should give the plaquenil a go, and if there is no help that you should be re-evaluated with the thought that what is happening now isn't absolutely part of what was wrong before.

I also think that as you live so close to Johns Hopkins it would be worth your drive to be referred there.

Some of your threads have taken off in tangents, the discussions about beta blocker use, etc. But whether or not its usual to take them to control spot anxiety, and whether or not you are an anxious person, is irrelevant to you having the other issues with physical changes observed by your doctor.

And again, like I'd agreed with Beth earlier in this thread, this is a support group, and lots gets discussed and we get distracted. It seems like to me that you've been researching this for so long, and you just had it all ready to present, this theory, that theory and the other too. And even though there isn't anything wrong with this, its a lot to take in.

Plus, much of the research you've sited goes back in time some. It doesn't mean it is no longer valid, but it does mean that by this time most doctors that specialize in this field would have read up on it and would have applied it to the diagnosis process if viable in a particular situation. That's why I think you should restart the evaluation process as if you never had the earlier history of possible myopathy, mmn, etc if the plaquenil does not improve your symptoms. and, if you're not yet on it, go ahead and start taking it. The risks are minimal compared to some other medications.

take care, :)
 
Rose,

I do plan on starting the Plaquenil, at follow-up visit to rheumatologist (APS specialist) on 11/13. The APS specialist at Hopkins said I should not be taking it unless I develop Lupus, so this is something new.

I went back and reviewed my notes, doctor's notes, tests, EMGs, etc. going back to 1983 (though believe first weakness began in summer of 80). I am pretty sure that whatever is going on now - including with tongue, speech and swallowing - is related to what was going on then. Actually made me feel a little better, to see that I was dealing with similar or related problems 10, 20 or more years ago, with little overall progression.

Given that I have 2 definite autoimmune disorders (APS and Psoriasis) and a lot of autoimmune disorders in my family, I think it is reasonable that these problems are connected to some autoimmune or immune problems (also have indications of a primary immune deficiency, i.e. low IgM, which has also fluctuated). However, so far no neurologist has thought thee was any definite link to autoimmune, and I've seen maybe 15 of them over the years, including ALS experts and neuromuscular experts. And as Dr. Patten said in the article I quoted from, anyone diagnosed with ALS and suggestions of an autoimmune problem should have that problem aggressively treated.

Maybe you are right, that I should be posting many of these posts on the research forum or on, say, the ALSTDF forum.


Thanks for the suggestions and feedback

Searcher
 
Searcher

APS is actually a syndrome: antiphospholipid syndrome and is due to autoantibodies directed primarily against cell membranes (the cell membrane is the "skin" of our cells). These autoantibodies preferentially attack a certain protein in the cell membranes of platelets (platelets are involved in the clotting mechanism) . . . and as a consequence . . . the most prevalent symptom of APS is blood clots. It would be rare for you to be diagnosed with APS and not have blood clots.

APS is obviously an autoimmune disorder and many times people with APS have some other type of autoimmune disorder as well. I have read a few of your posts and see that you have had symptoms for over 25 years . . . and symptoms that wax and wane. That simply isn't how ALS typically presents. It is certainly how many autoimmune disorders present, however.

You ask if APS can develop into ALS: given the etiology of APS, I would have to say no . . . but then again . . . no one knows how and why ALS develops (except for the familial form of the disease). Your physician was correct in that this disorder can affect skeletal muscle as well but the signs and symptoms would resemble something more on the lines of a myopathy. The autoantibodies of APS can also be directed against mitochondria and so signs and symptoms could resemble mitochondrial disease.

If your present symptoms are related to your past symptoms, then I would not suspect ALS, given how ALS is a progressive disease and you simply have not been progressing. My money would be on something autoimmune.

If your present symptoms are not related to your past symptoms, then anything is possible. What I would suggest is go to a neuro and get a full evaluation (including an EMG) so they can determine if you have any type of neurological problem. Until you do that, you and I and everyone else would be able to do nothing but speculate.

Wright,

Thanks for your thoughts. I will be going back to the main neuro who has been following me lately, and since about 96, on Nov 20. I also asked and got a referral to a speech therapist/pathologist for evaluation of speech, tongue, etc. (as have found these are more thorough than those by neurologists).

By asking on APS forums, I've discovered maybe 4 or 5 others with APS with undiagnosed, illusive, fluctuating muscle problems. It is that sort of observation which, of course, should be pursued by researchers. Since some autoimmune disorders can mimic ALS (according to experts like Appel and Patten (who I believe once worked together at Baylor) I would think and hope that those being worked up for ALS are screened carefully for any autoimmune disorders for which there is any hint, as Patten describes in the article I cited on the syndrome of ALS.

In my case, I had no clotting symptoms and it was only a fluke and my questioning and persistence (after being written off by 3 doctors, including 2 neurologists) that the blood tests were done which revealed the high (and increasing) titers of these APS antibodies. Odd, because the first sign of these elevated antibodies was in blood work at NIH for a neuromuscular evaluation (16 vials of blood). I noticed this one slightly abnormal result for something called anticardiolipin antibody; something I never heard of. When I asked the neuro who ordered all this bloodwork what its significance was, he said nothing; which raised the question as to why he ordered this test in the first place. It was only while searching for some answers to these problems that I discovered APS and the connection with these elevated antibodies, leading me to ask my doctor about testing for it. Internist and Neuro at the time were skeptical that the earlier reading was valid, but agreed to repeat the test, and sure enough, came back very elevated. Elevated antibodies have since been confirmed on repeat testing. Internist speculated that I didn't yet have clots because of all the supplements I take which have anti-clotting properties, like statin, fish oil, Vitamin E and more.

The APS specialist I saw a week ago said that if people randomly off the street were tested for the APS antibodies, something like as high as 5% would have them (a higher figure than I recall reading before). Presumably, most of these will not go on to develop clotting. But this does raise the possibility that, say, someone with an ALS diagnosed could have undiagnosed APS antibodies - undiagnosed because the person was asymptomatic and there was no reason to test for these. In fact, for women, often the first sign of APS is a miscarriage or repeated miscarriages. Since more men than women get ALS this would obviously not be a path to diagnosis.

Finally, re. your comment that ALS is progressive, and since my clinical history and picture does not fit with this, I don't have ALS, is the standard line of neurologists, and one I've heard several times over the years. However, as in so many things in medicine, there are general rules, but seldom iron-clad ones. I have spoken to and read about more than a few who had ALS who did not have a typical, steadily progressive pattern of symptoms. I could probably cite 10 such cases. Bulbar symptoms especially seem to often have some fluctuating course. So while I agree that ALS with a history like mine would be quite unusual, it apparently does happen.

In fact, I've read that Multifocal Motor Neuropathy (MMN) should be suspected when the course is slow and there is little disability after 5 years. I have hints of MMN (also related to an autoimmune disorder) on a couple of EMGs and have raised this question. The neuros did not take this seriously when I did, however if I continue to progress, I imagine that they will be more likely to rigorously consider this possibility. Indeed, it is one reason that I will ask the neuro to repeat the EMG and look specifically for signs of MMN, even though some things don't quite fit MMN, like cranial involvement, which is supposed to be unusual in MMN.

BTW, my current Neuro thought I had mitochondrial myopathy back in 96, but at last vist said he doubts this now, as there hasn't been the expected progression. I suspect that what has progression - albeit perhaps quite slowly - is the tongue atrophy and maybe some related muscles related to swallowing.

Anyway, thanks for your thoughts and I'll keep folks posted on what happens. Hopefully, the Plaquenil will make some difference.

Searcher
 
Searcher, I came down hard on you, and I apologize for that. I'm sure there must be people who are as interested as you are in the research aspect.
 
Hello Searcher....:smile: Have you ever had a muscle biopsy? One other thing. If you 'have' the 'antiphospholipid syndrome', then it may be a good idea to ask your doctors about getting on some type of aspirin therapy. This would be a good way to avoid stroke in the future.

Have a good evening!
 
Searcher
You May Have Just Developed Als And Have Both Dx. There Are People Here With Two Major Dx

Pat::
 
Searcher, I came down hard on you, and I apologize for that. I'm sure there must be people who are as interested as you are in the research aspect.

Apology accepted; though I don't see it as just the research aspect; I'm concerned about what I have and why; like, I guess, a lot of people who are concerned about symptoms possibly being ALS.

Searcher
 
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