Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Merry-Go-Round

lazor28
lazor28

Hello everyone, I am new to this site and new to the world of chronic illness.


My symptoms started about 4 months ago and I am still in the testing/undiagnosed phase. I have what my doctors call "all of the classic clinical symptoms of MG", although ach tests, emg, ncv, and routine labs make me look like a very healthly woman of 38. 


I have a wonderful team of primary care doctors and a very knowledgable neuro. My final tests to be performed are the MUSK antibody test (waited 3 hrs in Labcorp before they told me they send to Athena lab and it's not covered) and the MRI which I have to save for the cash price since my insurance deductible hasnt been met. The MUSK test will cost nearly $1100 so that is unlikely to be done.



My neuro has since referred me to U of Miami hospital for further follow up. Even she seems frustrated by my normal test results. Unable to get a true dx and no meds have been diagnosed. My voice is non-existent by mid day and swallowing of saliva is difficult in recent weeks, along with new hyperreflxia and pos Hoffman sign presenting. 


I feel like I have been thrown from the merry-go-round of docs and am now without anyone to help. I have one follow up sheduled in a few weeks with neuro that was really to discuss MUSK results when they were to come in, but without it being done, I feel like I am left without a doctor or a diagnosis.



If MRI is done and is normal, what is my next step? Please help, I am feeling desperate and without answers. 



Thank you in advance for letting me vent, if nothing else. 

mikedt
mikedt
I went through the same thing a couple of years ago. I am seronegative but I do have myasthenia gravis. The way they finally found it in me is a test that I don't know if your neuro will do. It's called a tensilon test. I was hospitalized with all of the myasthenia gravis symptoms but undiagnosed at that time. They administered the tensilon test in the hospital because it can be dangerous. When that turned out positive they began treating me for myasthenia. I know it's a hard road with all of the doctors and neuros and no relief. You have to stay positive and strong to deal with the ups and downs of MG. See if they will arrange that test for you. I hope this helps.
lazor28
lazor28
Thanks, Mike. I will have to inquire about this test.
MoSo
MoSo
Same here. Tension test confirmed diagnosis. Paid an obscene amount of money for blood tests my insurance wouldn't cover.
MoSo
MoSo
Tensolin...
migurl
migurl
The MUSK test through Athena has a program if it is not covered by your insurance company. Have you discussed the cost with Athena at all. I only had to pay $5oo to have mine done. It's still a lot of money but not nearly as much as the full cost. I would look up the number to Athena labs and contact the payment department for assistance. Good luck!!
Rhanson
Rhanson
Hello and welcome to the group. Lots of folks here with experience and similar stories. MG can be difficult to diagnose and the symptoms overlap with many other diseases.
One possible test: ask your doctor to have you try a medication that almost only helps folks with MG, mestinon (pyridostigmine). It is sort of like an aspirin -- takes effect in about 1/2 hour and lasts for a few hours and then disappears. If you have MG, and if you take at least a 60 mg tablet of this, you should see some improvement that comes, often dramatically, and then wears off. It is a very safe drug in normal doses, but does have the side effect of digestive system irritation and sweating in larger doses. It is often used as a test to see if it works; with the idea if it does, you are likely to have MG. You might suggest to the neurologist a test of this -- one where you take the pill at the doctor's office and wait around 3-4 hours in the waiting room to see what happens. We take it with food as that helps the digestive upset that some of us get with it. It is a simple, cheap, fast and pretty specific test to help with diagnosis. If you don't have MG, it may make your muscles feel twitchy.
MG is when our immune system prevents communication from nerves to muscles. Mestinon makes a communicaton chemical persist longer than normal and sort of overcomes the blockage for a short time with the chemical hanging around to be used and reused longer.
Good Luck Russ
limpnoodle
limpnoodle
Mestinon also works for most people with Lems.
lazor28
lazor28
@migurl thank you for that suggestion. I called Athena, was given a quote of $500-600 based on income if my doc fills out financial asistance request. This is obviously less, but still out of reach for me at this time. Brain Mri scheduled for this afternoon, that I will be paying out of pocket. Again, due to not having met deductible. I am not hopeful that it will show anything, but it's all part of the process, I guess.
lazor28
lazor28
@rhanson Thank you for having me here. My docs are all so cautious of starting any trial medications, I understand their thinking, but it is frustrating,
Joe_Fodor
Joe_Fodor
I got a diagnosis with an ice-pack test, and they gave me mestinon, which helped immensely. If you have droopy eyelids and you have MG, put a bag of ice on your eyelids for about five minutes. If your eyes are less droopy -- congrats, you have MG! Lucky for me the antibody test came back for AChR, so I was a textbook case. ~joe
lazor28
lazor28
The ptosis/blurred vision for me was likely my initial symptom, came and went for months, long before I ever felt ill. Only happens now late at night when I have overdone it or drive at night. I had pics to show my doc, but the eyes are not much of my problems as of the past few months. Weakness, dysphagia, and dysarthria are my most problematic symptoms since June-ish.
Marijke
Marijke
I have a very similar story, all tests, including MUSK are negative, but based on my response to Mestinon and the ice pack test I have been diagnosed with MG. am now on high does Prednisone, Imuran and of course Mestinon. My advice, find a clinician who goes by clinical sympyand not just tests, some MG is hard to diagnose. Things did speed up for me when I ended up in ICU les than 2 months after my diagnosis with a respiratory crisis. Good luck and hang in there, virtual hug.
lazor28
lazor28
Hugs back @marijike it does feel like they are waiting for a crisis first. I see my GP on Wed, my appointment is a bit earlier in the day, so hoping that I have the strength to speak a little more than I have been able to at some appointments. I agreed to wait out testing before trial meds, but that was months ago. I am going to try to push for something to at least see if it works. I'd been having slightly better days this week, but today..... not so much. Enjoy your weekend!