[mj]

Hi. I am a 51 year old female who developed a chronic and persistent cough in Dec 2013 after a bout with the flu.Since then, I have had a multitude of negative investigations and consults. In July of 2014, I started dropping things after a prolonged period of carrying (like a water bottle during a walk), pain in my elbow and forearm and I noted a tingling kind of sensation near my "sit bones". The cough persisted and became so bad that I could no longer carry on a conversation. I was given "special projects" at work to accommodate in hopes of improvement. I am a RN, working in a case manager role in the mental health field. This requires much conversation. By Dec, 2014, it was suggested I take the month off to rest my voice, which I did. I returned for 2 days in Jan and was encouraged from there to apply for LTD as I was showing no improvement. I continued with the consults and investigations. In March, I developed a slightly drooping eyelid. I was referred to Neurology. Since that time, I experience swelling in my hands and rt arm with fatigue or much use. I have discomfort in my neck, ribcage arms and both legs fatigue significantly with much use. My eye continues to droop. I am not able to do much of what I used to enjoy (hiking, biking, running or even long walks). I have difficulty cleaning my home without several breaks. I cannot tolerate massage tx as I stiffen as oppose to relax. If I push myself, I not only become fatigued, but that eve or the next day is quite miserable for me. I cannot garden for more than 10-15 minutes, etc. I have no stamina at all. I used to have several really good days, where I would wonder if maybe there was really nothing wrong with me (until I felt unwell again), but now am fortunate to have 24 hours without probs. I was denied LTD and have appealed as things are progressing. I saw Neuro in June and was tested for Myasthenia Gravis. All labs are negative and EMG studies were normal. MY GP states that there is a 20% chance of negative results while still having the disease and suggested I start a trial of Mestinon. I am wondering if anyone else has experienced this or if it is likely that I do not have MG? All symptoms lead that way, but no clinical findings confirm. Neuro will see me again in 6 months as I did have questionable lesions on my brain MRI- MS ruled out. I am becoming quite concerned re my health and now my income..input appreciated.

[beegolden]

Just wanted to give you some support. I've not yet been diagnosed but I have all the symptoms associated with MG. They're also associated with other diseases I have which complicates things I hope that you find your answers quickly and easily and that the best treatment for you will be found soon.

[Meech]

I wanted to say I hope you find your answers. I'm still new to this and only experience some of your symptoms. I too had a normal emg but I had an abnormal single fibre emg. My first set of labs came back normal and I am now waiting for results on MuSK antibodies which take a while to come back here in Canada. Do you if you were tested for those also?

[juliejayne]

MJ, sorry to hear that you have problems.

Reading through your description, swelling is not normally associated with MG. Pain is not caused by MG (according to all the MG Neuros) though it can be a secondary effect of fatigued muscles.

On the whole it sounds like MG. Being sero negative, will make getting a DX more difficult. But a Mestinon trial is IMO a very good idea. Mestinon only stays effective in the body of 4 hours, and it starts working after 30-60 minutes, so it should be clear if it is helping and it is easy to stop if it is not.

Ask the Neuro or GP if you can trial it and let us know how you get on.