Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I was ironically diagnosed during the awareness month of June. I had been dealing with the symptoms since April with no help from the ER or one neurologist until I sought out a second opinion after going to the ER a second time after it looked as though I had a stroke. I wanted to join a group to get some advice to see how to deal with Mg. I was put on prednisone and pyridostigmine and only on my second week but feel like the symptoms still overpower the medication. I have problems eating, chewing, talking as in sluring my speech, shoulder and hand weakness making daily activities extremely difficult. Does anyone know if the medication takes a while or there is more out there to do? Any stories or ideas would be so helpful
I suspect that the first place to start is for you to make yourself familiar with just what MG is? There are many different websites, but here is one that I would recommend
https://www.myaware.org/
To answer your pressing question - there's no quick fix to MG. At best it will take you a year or so to get to a stable, indeed comfortable place, After that the majority of us lead a fairly comfortable life with very few restrictions. Of all the autoimmune disease's to have MG is probably the 'best' or perhaps I should have said 'better'.
Take care
Peter
I too started treatment and got worse before getting better. Partially that is because by the time we have symptoms, we are far into MG.
I had the same treatment -- mestinon to try to deal with the immediate problems and prednisone to work for long term improvement.
I found my neuro very conservative at first in letting me use Mestinon -- saying 3 60-mg pills per day. After a stay in the neuro unit at the hospital with breathing difficulty, my mestinon was bumped up to up 8 pills per day "as needed." and that got me back home functioning again.
At the same time I started on 20 mg of prednisone per day but after a month with no effect, I was moved up to 60mg per day and in a few months my MG symptoms were pretty much gone.
About 5 months from start of prednisone to MG under good control, and then tapering back down to the lowest effective dose and planning the long term immune system suppression medication.
Mestinon only deals with the symptoms (like taking an aspirin for a brain tumor -- makes you better for a short time, but not useful to fix the problem). But with lots of it, I could function OK while waiting for prednisone to work.
Good Luck
Russ
Sorry to hear you are struggling with this crummy disease. Many of us have been through it and you are in the right place for support and info. You have been given some good info already but the only fast relief you may obtain fairly safely is IVIG. In my opinion, this is about the best option to push MG back while waiting for drugs to work well. You can adjust mestinon up if you tolerate it well. I hope you feel better soon but MG is a long process to get better so hang in there.
Best wishes for peace,
TJ from CA
Of a sudden my whole
Body is shutting down . Told I don’t have mg, someone please help me understand Can anyone tell me if this is very high or what this titer means ACHR GANGLIONIC N AB, S 0.10 H
You may well have struck lucky having come here. In as much as at least one of our number (Russ) does have medical training and experience and may well be able to help explain the figures for you?
In the meantime, you can brush up by reading this
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764484/
Best
Peter
It was a bit heavy for me.
TJ
You just can’t help yourself taking cheap shots at people. Stay off this site if you want to do stuff like this. people who come here because they are struggling with this terrible illness they don’t need your snarky comments. It’s pathetic of a man your age .
- Nan
The test result, as best I can tell is below the levels needed to diagnose something called AAG.
Trying to understand our medical tests in the absence of a doctor is difficult, but there are things we can do to bridge the gap between test result and doctor visit.
Some advice: Normally when we want to have a discussion we start a new post so folks can see it rather than comment on an existing discussion where it may not be noticed as this one posted under a different discussion.
First I want to comment in general about lab tests results that we see before we talk to the doctor. The modern electronic reporting sometimes lets us see results ahead of the doctor visit, and that is both good and bad. It makes us worry, often unnecessarily, but also gives us an opportunity to explore a little with the internet having useful information.
Medical tests are far too often not understandable by us without our doctor explaining what the purpose was. That means our first source of info should be the doctor. However, as that sometimes is difficult to get in a timely manner, there are options.
My tests are through my health provider, Mayo Clinic. All of the test results are put online in my own charts. I can immediately see if the result is in the normal range or not with numbers or a graph that shows the history of any previous tests so not only can I see changes over time, I know immediately, before I talk to the doctor, if I am out of range.
Then, on the Mayo system I can click deeper to find out the meaning of the test myself. That generally tells me why the test was given and what it means to be normal or abnormal.
We can assume you know the test result but haven't yet seen your doctor by your question. And that probably means you saw it online, as I don't think lab results are handed out by anyone but your MD otherwise. Maybe, if this is the case, you electronic lab result system has more information like mine at Mayo that can let you learn more.
Much of the time, the jargon used by lab reporting is complex and not easily understood by us. And that means we need to discuss it with our doctor. We can hope that if the test is abnormal, the doctor will get a message from the lab and immediately setup a followup. My test reports at Mayo are reported to me by the doctor with a phone call within 2 days of the test in my experience and we have the phone discussion of what they mean and what comes next. I like that way of reporting.
My second comment is that we need to be proactive in our own health care. When the doctor tells us "we are going to run some tests," I always ask "what are we looking for" and insist I find out what the tests are to rule in or rule out so when I see the results on my electronic chart, I know that test A was to determine if I had XXXX or not. I straight out tell the doctor that I will be looking at my electronic test results ahead of a visit and I want to know what abnormal result means. And I take a few notes so I can remember. I say -- "did I get this right -- test XXX is to see if my kidneys are working OK?" as I write it down.
So your test results need to be looked into for
1. What was the test for?
2. Is the result normal or abnormal?
You told us: ACHR GANGLIONIC N AB, S 0.10 H
To find out more we search on it in the obvious place and this pops up:
Wikipedia "Autoimmune autonomic ganglionopathy (AAG) is a rare form of dysautonomia in which the patients immune system produces ganglionic anti-nicotinic acetylcholine receptor (AChR) antibodies, inhibiting ganglionic AChR currents and impairing transmission in autonomic ganglia. Symptoms onset can be acute, subacute or gradual."
That implies the test you had was for something called AAG. However before we attempt to figure out what that is, we would like to know if it is out of range. The test seems to be done by Mayo Clinic Labs exclusively. Mayo has a research paper coming out in October, but the abstract published earlier that says about the test:
CONCLUSION:
"Ganglionic AChR-Ab level of at least 0.40 nmol/L is a moderately sensitive and highly specific marker for severe autonomic failure (AF), as is a level of at least 0.20 nmol/L for moderate AF if CASS score is coupled with anhidrosis of 25% or more, among patients with suspected ganglionic AChR-Ab autoimmune autonomic ganglionopathy. Antibody levels of less than 0.20 nmol/L have little clinical importance in the absence of clinical AF."
So if we have searched correctly, and not gone down some wrong path (easily done), we see your test at .10 and the abstract says under .20 without symptoms seems to have little meaning.
And so next we wonder what symptoms are there of AAG?
To find out more we google it and get to the page
https://dysautonomiainternational.org/page.php?ID=124
Symptoms of AAG can include:
-severe neurogenic orthostatic hypotension (very low blood pressure upon standing)
-fainting
-constipation and GI dysmotility
-urinary retention (neurogenic bladder)
-fixed and dilated pupils (Adie's pupils)
-dry mouth
-dry eyes
The same page tells us the doctor may order the test you had if
Testing
If your doctor suspects you may have AAG, in addition to traditional autonomic testing, he or she can order the g-AChR antibody test from Mayo Clinic Labs. You do not have to visit the Mayo Clinic to have this blood test done. The blood can be drawn at your local lab and shipped to Mayo. The g-AChR antibody is part of the Mayo Medical Laboratories Paraneoplastic Antibody Panel and the Autoimmune Dysautonomia Panel. Your doctor can decide which panel to order.
Why am I posting all of this info? Trying to show how anyone can try to find out what their lab results mean in the absence of the doctor to tell us. The gap between test and doctor visit with electronic records makes us worry too much, and it is something that places like Mayo are attempting to fix by giving more info in the electronic record itself.
As to my medical background, my career at Mayo Clinic was in medical research. It helped me understand how medical institutions work and gave me some confidence to try to look up things for myself, helped me with the jargon, and of course, working in medicine and with the best doctors and researchers in the world, we would hope may have rubbed off a little on me too ;-)
The bottom line is you probably should not be looking up test results before your doctor's visit! It is quite possible that all of the lookups I did and explained above took the wrong path and may be completely mixed up with what your test was for. Doctors need to be reminded to tell us why they give us tests and remember we will be looking at the results probably before they do nowadays.
Good Luck
Russ
So if we have searched correctly, and not gone down some wrong path (easily done), we see your test at .10 and the abstract says under .20 without symptoms seems to have little meaning.
Actually what I should have said is that the .10 result is good as it is low and tends to rule out AAG. These tests are never absolute and never completely clear, as we know with the sero-negative MG folks. They tend to tell the doctor to look elsewhere unless the symptoms tell something else.
Russ