NeuroTalk Support Groups - Striational antibodies

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Striational antibodies

Quote:

Thanks, Celeste.

LRP4 has been around for some time now. It's always good to bring it up, though, because not even some doctors know about it.

There are over 100 genetic CMS mutations.
There is LEMS (and probably variants of that).
There are 3 antibodies for MG, and multiple presentations and manifestations of it.
And there are channelopathies, which are probably "cousins" of MG, too.

Have you ever looked at the NMJ?

http://retro.grinnell.edu/academic/b...culty/lindgren

Look at all of the possible places for attack by antibodies! You know they're going to discover even more!

There is no way that all of the seroneg Mgers don't have MG. That's such a ridiculous premise. Doctors rely too heavily on labs and tests and not enough on their eyes, ears, and brain.

I'm grateful that there are people out there still doing research. Now if they could only find a cure for these damn diseases!

Annie (AnnieB3)

I brought this over from the LRP4 thread -- didn't want to be a "hi-jacker". :) My baby sister has been having sporadic MG symptoms -- double vision, neck and upper arm weakness, shortness of breath, late in the day fatigue, and swallowing difficulties. After a scope and barium swallow failed to determine a cause for the most problematic, the swallowing, she sort of resigned herself to "live with it". I should mention that several years ago she had a negative MG bloodpanel. A few weeks ago she told me that a pill got stuck in her throat and she used her finger to dislodge it. At that point, she noticed that her gag reflex was GONE! I freaked -- because mine is gone and the only things I could think of that might cause it are MG, MS, or a stroke. She called her neuro and got an appointment THAT DAY! He suggested an MG panel saying that things could have changed. When we went for the results, her AChR antibodies were negative, but her striational antibodies were OFF THE CHART. Normal is <1:60 and hers were in the neighborhood of <1:3500!! She was immediately scheduled for a CT (thymoma), EMG, and RNC. All have come back negative. I asked the doc if this meant she didn't have MG. Uh, no! He says we will just have to wait and see -- possibly do an SFEMG in the near future. Immune suppressants are out of the question -- she has chronic staph. Prednisone is NOT her friend. Of course we are all keeping a very close eye on her. (My sister does have RA and three thyroid disorders which "could" explain "some" of the MG-like symptoms. So, we don't feel like she is being ignored or pooh-poohed by her doc.)

So my question for you, dear Annie -- and for anyone else who might have a clue. Do you know of any cause (other than MG) for extremely elevated striational antibodies? My sister is 45 -- does not take penicillamine for RA and has not had a bone marrow transplant (the only other reasons I have found in my exhaustive search). :(

Thanks much!! Sorry I've been MIA. LOTS of stuff going on in my life. Miss you all a lot!

(((HUGS)))
jana

Hey, Jana!!! It's so great to see you! I hope you've been doing well. You are missed, too. :hug:

I guess I should've mentioned Ryanodine and Titin, eh? Did they check your sister's modulating ABs? Did they do the LEMS panel?

Well, I'm sorry she's having symptoms. Why do AIs have to run in families?!

Striational ABs could be related to the RA. The problem is that they aren't "specific" for any particular disease. Although, when they're that high, it means that something in the immune system isn't happy. Make sure you look at the Mayo algorithm pdf and the other articles.

The doctors were absolutely prompt, which is great to see, and right in what they did, so that's good. And I'm sure she knows a lot about MG because of you having it.

I highly recommend that you guys find a very good immunologist. There are tests that they run that other specialty docs don't. And there might be some familial thing going on that could help everyone. You never know what they might be able to "see" that other doctors can't.

If she has any other symptoms, even if they don't seem related to a possible MG or other disease, she should write them down in a journal. Track them like dogs! ;) Right now, it's those little—or big—clues that will help her figure this out.

I hate to say this but the paraneoplastic AB can be a sign of cancer elsewhere, other than the thymus. Does she get regular mammograms or paps? Has her thyroid been scanned? Has her primary doctor looked at her cells via a peripheral blood smear, to see if any of them look odd?

And I have to ask . . . have they checked her B12 level? Pernicious anemia is one of the diseases associated with a high striational AB. Does she have any digestive issues (i.e., celiac)?

I'm sure you've told her what to do if she can't swallow, breathe, or move! Are they going to try Mestinon? It might not be MG, but since her ACh ABs were negative, she has to go by symptoms.

Since she has SOB, she should go see a pulmonologist! They'll help narrow this down, too. But don't assume it's MG, just in case it's polymyositis or some other stupid disease (my aunt died from complications of that one).

At least she has doctors whose jaws drop when they see a significant test! :cool: Please tell her to hang in there and trust her instincts! :grouphug:

Annie

http://neuromuscular.wustl.edu/mtime/mgthy.html

http://www.ncbi.nlm.nih.gov/pubmed/23463255

http://www.ncbi.nlm.nih.gov/pubmed/15767509

http://www.mayomedicallaboratories.c.../Overview/8746
(Click the paraneoplastic pdf in the file.)

http://www.hindawi.com/journals/ad/2011/740583/

Quote:

Originally Posted by AnnieB3 (Post 1057288)

Hey, Jana!!! It's so great to see you! I hope you've been doing well. You are missed, too. :hug:

Thanks, Annie. One day at a time. :D

I guess I should've mentioned Ryanodine and Titin, eh? Did they check your sister's modulating ABs? Did they do the LEMS panel?

They ran the same panel on her that was used to diagnose me -- binding, blocking, modulating, and striational. They didn't do the LEMS panel, but during the RNC study, the tech and fellow (doc in training) were talking about how her muscle strength would have shown an increase -- so, LEMS was ruled out there.

Well, I'm sorry she's having symptoms. Why do AIs have to run in families?!

Striational ABs could be related to the RA. The problem is that they aren't "specific" for any particular disease. Although, when they're that high, it means that something in the immune system isn't happy. Make sure you look at the Mayo algorithm pdf and the other articles.

Thanks, I did. I am printing this out for the next appointment. Doc is neuromuscular specialist, but we could tell he is stumped.

The doctors were absolutely prompt, which is great to see, and right in what they did, so that's good. And I'm sure she knows a lot about MG because of you having it.

Sadly, she does. I have learned to deal.............BUT, I wouldn't wish MG on my worst enemy. To think of my precious sister having this..............almost unbearable.

I highly recommend that you guys find a very good immunologist. There are tests that they run that other specialty docs don't. And there might be some familial thing going on that could help everyone. You never know what they might be able to "see" that other doctors can't.

Haha. She will laugh. She already has a rheumatologist, an endocrinologist, a neurologist, an infectious disease specialist, a pain management specialist, a couple of ENTs, and, of course, a GP. Adding another doctor "notch" to the belt?? The infectious guy thought "something" had to be going on when she kept on getting staph (like over 30 times). They ran an IgA test -- normal.

If she has any other symptoms, even if they don't seem related to a possible MG or other disease, she should write them down in a journal. Track them like dogs! ;) Right now, it's those little—or big—clues that will help her figure this out.

She does journal -- thanks! She says she feels like a hypochondriac when she looks at what she has written. So many things going on -- her body is betraying her. The most peculiar (we think) is her recent diagnosis of paroxysmal supraventricular tachycardia. After reading your bottom link (cardiac muscles are striational?), I cringed.

I hate to say this but the paraneoplastic AB can be a sign of cancer elsewhere, other than the thymus. Does she get regular mammograms or paps? Has her thyroid been scanned? Has her primary doctor looked at her cells via a peripheral blood smear, to see if any of them look odd?

I saw that. :eek: But, it looked like cancer was most likely IF the levels were >1:7680?? (I'm holding fervently to this!!) She has had her thyroid killed -- she has Grave's AND Hashimoto's -- a condition called Hashitoxicosis. With all of the docs, it seems like she has blood work all the time. Will print and mention this smear. Actually, her thyroid has a nodule or enlarged lymph node. Multiple scans AFTER it was killed. It grows and shrinks at odd intervals. We often wonder if it has something to do with her two bouts of mono as a teenager. The CT scan she recently had to rule out a thymoma showed a superior mediastinal mass which is most likely related to the thyroid or an enlarged lymph node, although a thymoma could not be excluded. When we asked the neuro, he said that wording (thymoma) was ALWAYS used. The opinion is that the mass most likely is "that" thyroid nodule.

And I have to ask . . . have they checked her B12 level? Pernicious anemia is one of the diseases associated with a high striational AB. Does she have any digestive issues (i.e., celiac)?

Yes, B12 is ok. No digestive issues other than multiple food allergies. Wheat is one of the foods she DOES tolerate. :)

I'm sure you've told her what to do if she can't swallow, breathe, or move! Are they going to try Mestinon? It might not be MG, but since her ACh ABs were negative, she has to go by symptoms.

Yes, I have WARNED her!! I asked about a Mestinon trial. The doc is reluctant -- I think UNTIL after an SFEMG. We all know how LONG the Mestinon stays in our systems and can interfere with the test.

Since she has SOB, she should go see a pulmonologist! They'll help narrow this down, too. But don't assume it's MG, just in case it's polymyositis or some other stupid disease (my aunt died from complications of that one).

Thanks!! Had not even thought about a pulmo! She has mild-moderate asthma that is treated by her GP. At first, she just thought asthma was kicking up...........asthma meds aren't helping, though.

At least she has doctors whose jaws drop when they see a significant test! :cool: Please tell her to hang in there and trust her instincts! :grouphug:

I know. As distressed as I get reading about so many MGers being blown off by incompetent neuros...............am so glad my sister has a good team.

Annie

http://neuromuscular.wustl.edu/mtime/mgthy.html

http://www.ncbi.nlm.nih.gov/pubmed/23463255

http://www.ncbi.nlm.nih.gov/pubmed/15767509

http://www.mayomedicallaboratories.c.../Overview/8746
(Click the paraneoplastic pdf in the file.)

http://www.hindawi.com/journals/ad/2011/740583/

Thanks so much, Annie!!

:hug:
jana

Increased strength after muscle use 'is not' necessarily diagnostic of Lems. That's what they read in a book, but it is not true of me or a lot of other people who have Lems worldwide. And it is not required to have it show up on an EMG either, that's another false premise someone wrote down and a lot of doctors believe it.

Quote:

Originally Posted by limpy (Post 1057466)

Sadly, what I know about LEMS can be written on the slip of paper that comes in a fortune cookie. :eek:

My sister sees her neuro and endocrinologist this week. Looks like she will be getting MORE blood work.

Thanks for the info, Limpy!!

B12 is "okay?" Anything at 500 and below is suspect.

Limpy is spot on about that. LEMS on a repetitive nerve stimulation doesn't always show that slight strengthening, followed by weakening. For some people, they have to exercise before the test, so that they can see the decrement better.

If, scratch that, WHEN she goes to a pulmonologist, make sure that they do MIP and MEP. That will differentiate between asthma and a neuromuscular cause.

Did she see a neuro-ophthalmologist?

I totally get how annoying it is to see a lot of specialists. It's like a health care scavenger hunt! And the only "prize" you get after all of that is a disease (or two or three).

HOWEVER, MG can be deadly. Or at least put you in the hospital, where you can get a bunch of germs and die from that. ;) If you guys have AIs that run in families—and they do, contrary to what some docs say—then it's quite likely it's MG.

Did they send the ABs to Mayo? They invented the damn tests and have a better track record at accurate results.

Does her endo run morning, fasting labs? They are the most useful. Does she run electrolytes, too?

I hope she gets answer soon. Tell her to hang in there, and make sure to take time for a LOT of sleep and naps. It's the only way to manage MG without drugs, if she has it.

:hug:
Annie

Well..........................

We went back to the neuro today. I was loaded for bear , as in.............."Let's do these blood tests and what do you think about this journal article I found?"

Didn't even get to open my mouth. Neuro came in and said CT scan DID appear to show a thymoma. We need to get my sister to a surgeon! We thought the CT was negative, although a superior mediastinal mass was found -- hints were that it might be thyroid related (endo says "NO!"). Radiologist apparently didn't know about HIGH striational antibodies which would lead him to conclude mass is a thymoma.

Neuro put my sister on a trial of Mestinon.

We are stunned --- and exhausted.

Many thanks Annie and Limpy -- and everyone else who read or thought about this.

P.S. Annie, her MG panel WAS done at Mayo!! I told her that you said she DOES have a good reason for all the naps she has been taking. :D

That's friggin' great. Well, the doctoring part. In someone with MG symptoms who has a high striational AB, the chance of a thymoma is super high.

It sucks that she probably has a thymoma. It is possible that once they remove it, her symptoms "might" lessen or be gone. Might, maybe, possibly . . . I sound the way doctors talk. ;)

You know a good surgeon, if I remember correctly.

I hope she will now pay close attention to what her body is saying to her. She should get a lot of rest before any surgery. She should also consult with pulmonology beforehand, because the anesthesiologist would want to know what her stats are.

I also hope they're careful with any pain meds, like morphine! You know the drill.

It really is a relief to know what's going on. I'll bet she's so grateful to have a sister who has MG. That always sounds awful, but you know what I mean.

:hug:
Annie

I am so happy to hear you guys have an answer, Jana! I am sure your sis is grateful for your guidance.

I've been reading this particular thread w interest. I have pos striational abs (not outrageously thou)and my neuro never recommended a thymus eval. Now I'm panicking. I looked at an old CT from 2 years ago for a lung lesion and an incidental finding was residual thymic tissue in anterior mediastinum.

Can you guys weigh in? Shud I be looking for a new neuro? Racing for another ct scan? Love your thoughts, Annie, Limpy, Jana. Should CT include contrast?

Thx so much.

Quote:

Originally Posted by AnnieB3 (Post 1057993)

I would insist on a cat scan for sure.