[Rybowski]

Hello everyone! How is everyone feeling today? I have recently been tentatively diagnosed with Myasthenia Gravis. Well, they were sure, but then not, then yes, and then maybe. Ahhh medical science.

A little about me. My name is Ryan and I am a 30 yr old living in Vancouver BC. Run a cinema as a day job, make music as a hobby. About 2 months ago, I started to get weak. It progressed over a couple of days, until I woke up one day to find I could barely move without fear of collapsing. I was able to haul myself to my doctor, and on his advice, I checked myself into the ER. Admitted to hospital for 4 days where I was put on Mestinon and IVIG. For the last 6 weeks I have been back to my normal self, and enjoying every minute of it!!

That's the recent history. A year and a bit ago I woke up to find that I had double vision, and diagnosed with a Super nuclear bilateral gaze palsy by my neuro opthamologist (4th doctor that I saw). Talk of multiple sclerosis started. MRI and CT scans galore, and scheduled spinal tap on the horizon. This lasted almost a year. Going from double vision to normal vision but unable to move my eyes left or right voluntarily. No evidence of MS found, which was the best news I have ever received in my life. It's interesting because my big hit of weakness came on the day before I was scheduled to get the spinal tap. Dodged that bullet. I have had smaller MG type attacks in the past. Always brought on by big doses of stress. Gotta learn to manage stress better.

Saw the MG specialist on Friday. Got a clean bill of health. She told me that I may not have MG because a lot of things don't fit. My ACH and single fiber EMG tests are negative, thymus is normal, thyroid levels are normal although I do have a nodule on my thyroid that they biopsied. Still haven't heard about that.

Today I woke up, had my morning coffee, and got a bit scared. My body feels as though I've had 10 cups of coffee. Bit shaky, and on edge. Not weak, but my muscles are killing me. That's the fault of my friend's kids asking me to pick them up and throw them around last night. I'm freaking out because my girlfriend and I are planning on moving to New Zealand in a few months. I can't go if the MG comes back. Won't be able to afford the health care. Took a mestinon just to see. Although the mestinon didn't seem to help me that much a few months ago. My main concern is that this is about the time the IVIG should be wearing off. I hope that this isn't the case, and that it's just a case of me having too big of a coffee before breakfast.

Depp breaths. Gotta calm myself down.

Anyway, thought I'd introduce myself and share my experience. Would love to hear if any of this sounds familiar to anyone. Glad to have found this community!

[suev]

Welcome!

As you know by now, MG is pretty unpredictable. Unpredictable from day to day, person to person, within a day, over a season or two.....you get the idea.

Coffee can act in the same way as Mestinon (though not in any way to the same degree). All you can do at this point, is what you are doing.

It helps to keep a 'journal'. Something you can just record what meds, what reactions, etc versus your activity level, the time since last IVIG....just notes that might help you pull together a profile of sorts for what you are experiencing. It could help you and your neuro over time.

Again, welcome and feel free to ask questions....this is a great community with a wealth of knowledge.

[pingpongman]

Welcome to the board!!! This is a great place with lots of advice. You may know that negative test results doesn't mean a whole lot as far as MG goes. We have several people here that have tested negative several times. Matter of fact my first tests came back negative but my Neuro said he didn't care because eventually the tests would return positive and sure enough within 3 months my blood work from Mayo came back positive.

As Suev said everyone with this disease is different and the treatments are varied person to person. What works for one person doesn't work for another. I am now on my 3rd round of IVIG treatments with no results. None of the meds are helping just holding my current state and hopefully keeping me from getting worse.

Again welcome and don't be afraid to ask questions.
Mike

[Stellatum]

Hi, and welcome. I have been diagnosed with MG although the blood tests (3 of them) were negative, and my first two SFEMGs came back normal. A different doctor did the third one, and diagnosed me on the basis of it.

What your story screams to me is THYROID. It's very common to have thyroid problems along with MG. I know you said your blood test came back normal, but thyroid hormones can fluctuate, especially if you have a nodule that's spewing them out.

I have Graves disease--I've been hyperthyroid on and off for years. That "too much coffee" feeling you describe is very familiar to me! Hyperthyroidism can also cause muscle weakness.

I'm not saying you don't have MG. I'm suggesting you may have thyroid troubles as well. Mostly, I'm highly, highly recommending that you see an endocrinologist. And endo can give you special thyroid tests that non-endocrinologists don't understand. My daughter has been having what seemed to me like symptoms of hyperthyroidism since last November, but her thyroid tests were normal. Just recently she got diagnosed.

Abby

[Rybowski]

Thank you Suev, Mike, and Abby for the warm welcome. The journal is a great idea! I wish I had been doing that all along. It would have been a great help to my Doctor's. I will get on that right away.

I have been reading a lot of posts today, and unpredictable is certainly the right word for MG. The tough thing for me is that I can't get anything concrete yet, but I'll keep at it. My Doctor's have been really great.

Mike, 3 rounds of IVIG, I can't even imagine! I had 4 IV sites go bad during my treatment. Let's just say, I don't like needles.

You make a great point Abby. I am going to be chasing after my Doctor tomorrow about the biopsy results. I'll also request to see an endocrinologist. I have told my Doctor's that my mother has thyroid problems, so it could run in the family.

Thanks again everyone!

[pingpongman]

One more quick thing. DEMAND a copy of all your tests including blood work. This will come in handy in the future.
Mike

[Rybowski]

Originally Posted by pingpongman

One more quick thing. DEMAND a copy of all your tests including blood work. This will come in handy in the future.
Mike

Thanks Mike! I'll definitely do that. Especially before I move to NZ.

However, I feel it coming on once again. It is starting in my shoulders like before. Arms are very heavy. I consistently failed the "chicken wing" test as I call it while in hospital. I am sure you all know that one. Most of the time in hospital, I could barely get my arms up nevermind resist anything. Feeling it in my shoulders and upper back like before. Very tired muscles. I held them up for awhile to test my strength, and while my muscles didn't give out, they are still burning from it. I hope deep down that I am just really out of shape.

I am taking my Mestinon again for now. Going to the doctor soon, but may have to make a call to see my neurologist ASAP. might have to go for another round of IVIG. I'll do whatever it takes at this point to not end up in hospital again.

Have to get on that quitting smoking as well. I am working on that one as we speak. Don't want MG to turn into LEMS to turn into....well, you know. Yes, I do spend a lot of time scaring the crap out of myself. Every shake or tremble and I think it's an attack coming on. I have never been this tightly wound.

One question, is your sleep affected for any reason? I feel like I don't sleep very much, even though I may get 7 hours according to the clock, it doesn't feel like I slept. Sometimes not at all.