I recently found out I have 0.12nmol/L of anti-AChR antibodies, but am told that's too low to be of any consequence. I certainly don't have the tell-tale symptoms of full-blown myasthenia gravis (MG), but I do have a very easily fatigued, twitchy, blinky left eye (and milder symptoms in the right one). Sometimes I get shooting pains in it, and it feels like something is wriggling or cramped behind it. My optician can find nothing to explain these symptoms.
My neurologist can't find any tendon reflexes and so thinks I might have chronic inflammatory demyelinating polyneuropathy (CIDP). That's despite the fact that, apart from the occasional shooting pain, cramp, or twinge, I don't have any motor-control, spasm or electric-shock-like symptoms. What I do have is this longstanding, progressive, bilateral - and now debilitating - muscle pain, stiffness and weakness that responds well to prednisolone.
The more prednisolone I take, the better I feel, and the more activity I can do. It transforms my quality of life, even though I've never tried more than 30mg/dy. I've been on and off it three times during the last four years, but am being denied any more treatment until I have a firm diagnosis. I'm now in bed or in a chair, all day, almost every day. The strength and energy I used to have is gone. Bizarrely, I can't raise my upper arms above the horizontal anymore, unless I lie flat so the weight is taken off my shoulders and upper back. I've been wanting to join this group for a while, but have had to wait until I had a 'good' day, with less exhaustion and brain fog.
I'm awaiting an appointment for nerve conduction tests, but I fear these investigations are going to draw a blank like all the others. I can't help but think, these anti-AChR antibodies have no place a healthy body, so surely they must be affecting me somehow!? I suggested trying a low dose of pyridostigmine, in the hope it revealed a clue one way or the other, but was refused.
I've lived with atopic dermatitis and multiple allergies all my life, which are controlled with local steroids, antihistamines and emollients. My mother had ankylosing spondylitis. Those facts, and my good response to prednisolone, convince me I have a autoimmune disease. Some days, I'm at my wits' end.
Anyone had a similar experience? Did you have similar symptoms to mine on the path to developing MG? Any help would be appreciated.
Edit: I forgot to say, I also have controlled asthma, and apparently my tendon reflexes have disappeared.
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AtopicGuy
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Hi - AChR antibodies are not conclusive and many people can be sero-negative. I was diagnosed purely on clinical exam although when tested by AChR antibodies was the highest my Neuro had ever seen, however, he treated on how symptomatic people were saying some patients with high counts had few, low or no symptoms whilst others who were sero negative very symptomatic.
There are now tests for different other antibodies which cause Myasthenia - look at the website for details.
Two things resonated with me - but I do have a very easily fatigued, twitchy, blinky left eye (and milder symptoms in the right one). Sometimes I get shooting pains in it, and it feels like something is wriggling or cramped behind it. My optician can find nothing to explain these symptoms.
The twitching eye - I described mine as feeling a colony of ants marching through my eyeball. And easily fatiguable. That went on for years and unfortunately it wasn’t until symptoms deteriated very seriously after treatment for a heart arrhythmia that I was finally symptomatic enough and diagnosed. One of the clinical test was to move my arm up and down sideways as fast as I could, for as long as I could, I think I managed 3-4 times.
I was told at the time (2014) it was not an uncommon experience to have a long wait for diagnosis.
It was never suggested that I took steroids so took steroid sparing drugs instead which take much longer to show an improvement in symptoms but it has been a slow steady improvement and I am now reducing my medications. I would say I have an almost normal capacity for everyday life but I am unable to exercise as I once did but then age and heart also have been life limiting. Someone once told me at the start of my Mg journey that it was all about pacing oneself, took a long time to learn that one!
Have you been in touch with Myaware? Having a really good neuro experienced in Myasthenia is first step but even then it can take a long time to get a diagnosis.
Have you been tested for MuSK antibodies? I think there are now also a few more known to cause Mg.
You may get a much better response to your queries by joining the Myaware FB page or one of the other Myasthenia FB groups which are much more active. Myasthenia UK used to be a good one.
Thank you so much for replying. I was beginning to think no-one would! I don't do Facebook, but maybe I'll have to. I can't stand much more of this low quality of life. I'm impressed that you manage your symptoms without steroids, because I'm told it is the risk of side effects that prevent me being prescribed any more.
I have read that many patients with obvious MG are completely seronegative, and that about 85% of diagnosed sufferers have Anti-AChR antibodies, but there is no correlation in each individual between their titre and severity of symptoms. However, the logic only seems to be applied one way, because I am being told that my 0.12 nmols/l is not enough to explain even some of my very indistinct symptoms. My test result says I'm "negative" for MG because 0.25 to 0.50 is considered borderline, and > 0.5nmol/l is positive. I've not been tested for MuSK or any other antibodies. Hopefully, the nerve conduction studies will shed some light, but I'll not hold my breath.
Like you, I've had no choice but to cope with symptoms for years. I always thought the disease would reveal itself as the symptoms got worse. I never dreamt I'd have no life and no diagnosis at the same time.
Hi, it is all very confusing, my result was 0.69nmol/L and was told it was a weak positive. I was give a provisional diagnosis of MG. I was then prescribed mestinon which did seem to help with the fatigue but then was later told to stop taking it as that the lab had changed how they interpret the results, that I no longer fall into the positive range, so no longer considered to have MG. The previous marker was any result over 0.4 and they had moved this to any result over 0.6 to be considered positive. I am not sure if there is a link but my dad has MG which is why I asked to be tested. I had been diagnosed with Fibromyalgia but felt MG needed to be ruled out as the symptoms seem to have similarities. I went to speak to the GP about it and he said he wanted a second opinion, however, he then referred my to rheumatology rather than neurology. At this point I give up
But your 0.69 nmol/L result was still over the new, abnormally-high, 0.60 threshold!!!
I understand that every type of blood test can give false positives (especially when taking into account human errors, such as cross-contamination, poor practice, mis-labelling, etc.) That's why healthy people should not be screened for MG. Patients should show clear symptoms before testing. But if your symptoms are bad enough to be diagnosed with fibromyalgia, AND you have 0.6 nmol/L of anti-AChR antibodies, AND your symptoms clearly respond to pyridostigmine (aka Mestinon), then the odds of it not being MG are incredibly slim.
Since MG is an autoimmune condition, and fibromyalgia is not, a short course of nice, cheap, generic prednisolone (steroid) should sort it out. If your symptoms haven't improved after 2 weeks on at least 20mg/day, then it's a tick for fibromyalgia or CFS/ME, and a tick against a diagnosis of MG. It would be a good idea to test for antibodies before taking steroids and again at the end of the course, since their level should go down. (Note: There's no need to taper off such a short course of steroids.)
"In most cases, myasthenia gravis is not inherited and occurs in people with no history of the disorder in their family. About 3 to 5 percent of affected individuals have other family members with myasthenia gravis or other autoimmune disorders, but the inheritance pattern is unknown." That's the 4th piece of evidence in your favour!
Some of that 3 - 5% might not actually have MG: they might have one of the congenital myasthenic syndromes (CMS). Their symptoms tend to become apparent at a young age, they rarely involve pathogenic antibodies, and (because they are not autoimmune diseases) usually don't respond to steroids. That takes a bit of unravelling, so you could ask for a referral to the Oxford Congenital Myasthenia Service (see link below). It's their job to sift out UK families with genes for myasthenic disorders. Their referral form, which you can download, asks what level of antibodies the patient has, and what type of EMG or other nerve tests have already been performed.
Thank you so much for your reply, it is very informative and thought provoking. I realised that the test result is still over the lab result cut off point but I guess the neurologist would have known this too. I did have nerve conduction studies done at the time and they came back normal. I’m also have other autoimmune conditions, Hashimotos (underactive thyroid) which has been managed well for years and Pernicious Anaemia which I don’t think is treated sufficiently like a lot of other people with the condition. With the diagnosis of Fibromyalgia in the mix it makes it difficult to work out what is causing what. Personally I do believe I have MG but with milder symptoms than others affected. Interestingly I had a short course of steroids and antibiotics recently, this was for a chest infection but they didn’t make any difference. My GP still has down on my notes that I have MG and is careful about what medicines I am given. I will ask about referral to the clinic in London but also chase up the second opinion as obviously sending me to a rheumatologist will be waist of everyone’s time. Thank you again for the information you shared
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