Myasthenia Gravis

[opentuned]

I have been on prednisolone for almost 2 years for Polymyalgia Rheumatica (GP Diagnosis) but over the last year I have been losing strength and other neuromuscular issues. I have seen Neurologists but EMG and blood test always came back inconclusive. Until Last week! A blood test for AChR (Serum) came back positive for Myasthenia Gravis (MG) . I had the same test done last April when it was negative,

I'm just wondering if anyone else has MG as well as PMR?

[AtopicGuy]

In the USA, any level of anti-AChR antibodies is deemed abnormal and Positive for MG. In the UK, you are deemed Negative and therefore normal unless you reach 0.25 or even 0.50 nmol/L. Normal blood should not contain antibodies that interfere with muscle control!

[opentuned in reply to AtopicGuy]

Thanks, that's interesting.

Mine was 0.66nmol/L so I guess a clear positive

[AtopicGuy in reply to opentuned]

I wonder what the earlier "inconclusive" blood tests you mentioned said? I've suffered waxing & waning muscle weakness, chronic fatigue and pain for as long as I can remember. I started having problems with my voice 35 years ago, and problems swallowing 25 years ago. My shoulders became noticeably stiffer and weaker 15 years ago. My symptoms respond to prednisolone, especially doses of 30mg/dy or more, but I've been denied further treatment. Just before Christmas, my 4th rheumatologist tested me for anti-AChR antibodies and declared me Negative" at 0.12nmol/L. I certainly don't have the symptoms of full-blown MG, but the clues are there. I'm pursuing it further, with a neurologist, next. I doubt nerve conduction tests will be sensitive enough for me. I reckon a MuSK is worth ruling out, and trying pyridostigmine would tell us something, one way or another.

[opentuned in reply to AtopicGuy]

I only have a ‘negative’ result from the earlier test but the most recent one was the 0.66 result. Interestingly done at the eye hospital. I also had EMG that i didn’t see the report for but the neurologist said it was inconclusive. She presumed a ‘neuromuscular condition’ and referred me to a rheumatologist (not seen yet).

I have had a variety of weird and wonderful symptoms over the last 30 years. A few days every couple of months then fading away for a while. These kinds of conditions are very difficult To diagnose because the symptoms come and go and vary significantly in intensity- even within a few hours!

i am wondering whether The Polymyalgia diagnosis was correct given that corticosteroids would probably mask symptoms of early stage MG.

but I have had drooping eyelids fir the last five years and skin rashes too!

[AtopicGuy in reply to opentuned]

Ask you doctor to look up the details of that previous "Negative" test. If it is above 0.05nmol/L but below 0.25nmol/L, then your MG was brewing in plain sight, untreated. I've never had a successful diagnosis, let alone an adequate treatment (except for three trial courses of prednisolone during the last 3 years) so my only option has been to adapt to my ever-worsening limitations. Whatever this illness turns out to be, it has made my life very, very hard. I always thought that, one day, my symptoms would get so bad, the cause would give itself away. Here's hoping it'll happen soon: the shoulder stiffness now extends all the way down to my hands.