Last Winter. Lost use of my hands and was blamed on Carpal Tunnel after building a the lights on a 50ft christmas Tree for a outdoor mall. It probably was partially that. But after that, barely able to open a bag of potato chips the EMG came back mild. Level 1. The Chiropractor that was more therapist/neuromuscular specialist used the term "My muscles are Sticky" meaning she felt calcium deposits on my arms. Tunnels were mostly clear on my wrists, injections of steroids in my wrists did nothing. I got very bad CN4 Palsy about a month later Vertical and Rotational for several months. 6 months later. Students teachers checking my eyes could find the diplopia, but after wards the head of the department could not. Basically they took too long.. and fatigued my eyes. Fatigue tests pretty much were able to show the divergence consistency. So off to the blood work and waiting for the results for almost a week now!

Never in a million years, researching when I first got CN4 palsy did I think MG fit what I had based on what the medical sites quote for symptoms. If one of them had quoted the inability to smile, I would have dug deeper. The eye drooping is so rare and mild and late at night, I just wrote that off.

So over the past decades of wondering why I can't smile, thinking it was normal that you could forget how to swallow on a rare occasion, choking on saliva is normal, that I have no clue what was poisoning the nerves in my arms and legs. Why after working out of town for a 2-3 weeks, I would come home and be sick for a month. The shear aking of my hands and feet after short working spells, need to sit.. Exhaustion needing a nap in the afternoon. On top of that I had Meralgia Paresthetica where the LFCN was so damaged they had to cut that peripheral nerve out of my hip because it was causing so much pain a few years ago. Always have to wear heavy socks. I pretty much pick up the minor things from reading and watching this forum here.. Watch I come back negative Everything seems to fit very well.. At one point I was trying to get my thyroid checked, but my PCP refused, and even HLA-B27 thinking it was reactive Arthritis over a decade ago before they figured out the MP in my hip. MP now MG. My last name is MUD too! I have been told for 20+ years there is nothing wrong with me. Just change how to live your life.

Hi, rMuD. Welcome.

HLA B27 is associated with Ankylosing Spondylitis.

Do you have a good primary doctor or endocrinologist? Having your thyroid tested, especially if you have MG, is a very smart thing to do AND on a regular basis. Many people with MG have some sort of thyroid problem. Stupid doctor.

Have you had your vitamin B12 checked? If not, I highly recommend you do, plus your vitamin D level. Those are very common deficiencies.

Obviously, you do have things wrong with your health. And MG can be life-threatening. Kind of hard to go on with one's life when one is so weak and unable!

I hope you will start receiving the care that you deserve!

Annie

HLA-B27 Is also the test for Reactive Arthristis, Ankylosing Spondylitis can be part of RA as well, but not always.
HLA-B27 antigen: MedlinePlus Medical Encyclopedia

Yes, I have the top multi discipline Neuro medical group for rare medical conditions that have worked on me for almost a decade. MG was missed. MP was also missed for many years. I am difficult. MG fooled the head of Neuro-Ophthalmology for Case Western Reserve University for 9 months as well.

So yes, I have all my ducks in a row. Just waiting for the slow University hospital to get the Thyroid blood panel and the anti-body panels done.. it has been a week and no results yet. Getting annoyed! After that if I see some reason to continue down the MG path, the CAT scan will follow. With the trouble I've had with sternum, I'm pretty sure we are going to find something. Way too many things fit.

I've hit my out of pocket max this year, It's full speed ahead! Neurologist MG specialist at Cleveland Clinic appointment is set for Oct 5th. After the blood work is in, I'll start the Tuesday Morning, cancellation appt checks.

Thanks for the input!

Rob.

Yes, but your current issue is not inflammatory, correct?

Have you seen a rheumatologist?

Annie

Do not have a referral for rheumatology yet. Still after a week, no report from blood work from thyroid, anti-bodies (Total of 12) generated from neuro-ophthalmology, CAT scan ordered, and Referal to neurology (oct 5th).

What am I looking for as far as inflammatory to get a referral for?

Between arthritis and what the other doctor called "calcium deposits," it's a good idea to see a rheumatologist. They are the "itis" doctors.

Annie

ah! there are assumption that there was actually calcium, thinking there was maybe a build up of anti-bodies or whatever.. and this was in the muscle not in the joints. and there was lack of inflammation, that made the carpal tunnel diagnosis odd.

So first round of Blood work is clear, CT Scan is Clear. Thyroid is on the low end but normal, AchR Binding,Blocking,Modulating that were sent out to a lab came back negative but were listed as experimental and non-diagnostic. Seeing a Neuro-Muscular Neurologist for my Birthday Next week. Physical symptoms are still showing. Though with reviewing my life I have never been able to smile, and my son does not appear to either. So that symptom is off the list possibly. There were other medications that I was on that may interfere with MG that we have taken me off of that were doing odd things.

I am the anti-Musk type??? Or nothing at all! It appears the muscles are increasing fatigue with sustained effort. Reading up on the Musk Type, and symptoms just now, Dr. Yi seems to be one of the authors on this type. That is who I am seeing next week.

.........Don't get it. Please explain... Why give a test that is non-diagnostic? The Mayo Clinic is the lab of choice for these (AchR antibody) assays. Diagnosing MG is fraught with many false negatives. All the best... patrick123

I do not know either. I am not discouraged. It will answer many questions, if not, It took 15 year to figure out MP, I never expected MG, but I suspected something was poisoning my nervous system for years.

Today is D-Day and my B-Day. I see the Specialist that wrote the paper on New techniques on diagnosing MG in 2013. At Cleveland Clinic the #2 Research Hospital in the World. I'm sure he will say I do not have MG. Of course as I'm sitting here struggling to breathe, trying to hold my head up, looking blurred vision, 1/2 closed eyes. Been a long road to, this was a surprise diagnosis, I thought I was done and just had to get off my *** and being knocked on my butt every other month was me just not trying hard enough. After a Torn Achallies, MP, Carpal Tunnel (golfers Elbow/MP), CN4 Palsy in the past 8 years.. WTH what is another M.x Disease to add to the pile.