We thought it was a stroke, but it wasn't. It is now confirmed that my dad is suffering from myasthenia gravis, a neuromuscular disease (to find out more, visit http://en.wikipedia.org/wiki/Myasthenia_gravis) .
It's not a common disease, and I have yet to find a succinct answer when people ask me, "what's that?". Basically, myasthenia gravis (MG for short) is a condition in which the body produces antibodies that act on the muscle by weakening it. As the symptoms come and go, it's hard to detect and not easily diagnosed unless we are speaking to the right specialist, in this case, a neurologist. But how often do we consult one?
Anyway, this is how we discover... just 3 weeks ago, my dad decided to seek TCM as an alternative treatment for his respiratory problems (he had a severe case of pneumonia last year and was placed in Intensive Care Unit for a few days, hence is now recovering from the remnants of pneumonia). When he first stepped into the TCM consulting room, the first comment the Chinese physician gave was "你中风了" ("you had a stroke"). Because of his drooping left eyelid, and weak facial expression, the physician suspected he had a stroke. And THAT, that comment completely put my parents on a panic mode.
The next thing we did was call upon his respiratory doctor in-charge and told him about it. CT scans were arranged for the chest and brain. In the meantime, we waited for results. The waiting was torturous. We started to examine his bodily cues/symptoms, any sort that would suggest signs of stroke. We changed his diet just to be safe. We had to go through the emotional ride again...and we thought we just survived an eventful 2007! Given what had happened last year, I went to buy books on coping with stroke and about optimum diet, with the intention of preparing myself and my family on the next steps.
One week later, the results were out. The respiratory doctor, too, suspected it was stroke because there was an infarction in his left hemisphere (though find it strange that he had a drooping left eyelid). That said, he referred us to a neurologist (which is normal procedure for stroke patients) for a more accurate diagnosis. So we went.
The neurologist asked questions, did physical examination, repetitive nerve stimulation test, etc tests. He said, "He has myasthenia gravis..."
What mya...? Did I hear gravis? All I know is that gravis means serious!
"...but it's treatable" added the doctor. TReatable - yes, that's a relief to know. The doc started explaining the pathology and its treatment. My dad needs to be on medication long term. However, during the initial stage of medication, his health condition might weaken before it picks up and shows improvement. The weakening stage can be life-threatening if one is not careful so he strongly advised we admit my dad in for the first 5-6 days when he's taking the medicine.
The events -- the visit to the doc's clinic for the scan results, our expected it's-a-stroke-confirmation which turned out to be a neuromuscular disease, and the inpatient treatment that needs to be commenced asap -- occurred within the same day. The turmoil of emotions that went through us...indescribable. Relieved that it was not stroke, but some autoimmune disorder? Puzzled about how 'lucky' (or suay) my dad is? Fortunate that the disease can be controlled? And the thought of he being hospitalised AGAIN?
What can we do, but simply move with the motion of things - registering, waiting for the ward, arranging for meals and the 'usual' logistic issues (I hate to say this but we have been through this process numerous times)...
Throughout the stay, he showed improvement and could speak more clearly. No more slurring, no more drooping eyelid. He looked much much better :) ...however, these occur only when the medicine is taking effect. Once the medicine loses its magic, the symptoms return. Indeed, medication is going to be on a long-term basis.
On the fifth day, he was discharged. That should spell the end of things, isn't it? I don't know. A couple of scans is further needed to check on his thymus because it is supposedly the culprit for the antibodies...
So the wait begins again...
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6 comments:
I have MG now for a little over 5 years. If I may make a suggestion, please. Try to find a neurologist that specializes in this disease. Most neuros only know about MG from a text book.
You can call the MG Foundation in your area or even the MDA for a referral. If I can be of further help feel free to contact me.
I wish your father and your family well.
Hi Connie,
Many heartfelt thanks for sharing this with me...and your 'timely' blog. This means a lot to me and my family. Will get in touch with you if I need any advice.
Once again, thank you so much.
When I was having problems my family dr was sure that I had had a stroke. After a barrage of tests ruled that out he sent me to a nuerologist who gave me serious of test for MG. The tensilon test was the closer. I had MG.
I am 72 yrs old and was diagnosed with mg in Aug of 03. Of course he immediately put me on mestinon. I went through a serious of IVIG's with no positive results. Since i knew all about Predisone I had told the dr that I wanted to avoid that medicine at all costs. Eventually he put me on azathiaprine(Imuran) and it has been a big help. I have regained a lot of my muscle strength. Well, I am a lot better and grateful. I take 120mg @ 6am,11am, 3pm and 60mg @6pm of mestinon daily. Azathiaprine I take 120mg @ breakfast and 60 mg at supper. This is working for me. Not 100% but am thankful for what I have now. The Imuran requires me to have liver function tests and cell count tests on a regular basis but that is working. He bumped my Imuran up to 120mg at night but it messed up my liver so we went back to 60mg at supper have stayed there. No one can really know or understand what an MG patient goes through. I was sure a feeding tube was in my future. So many things we take for granted. I have elaborated here only to explain that I know MG rather well from my perspective and to pass on my treatment and what has helped me. I don't think my kids realize what I have gone through since they don't live real close.
Sorry to go on so long. I tend to do that. The Tensilon test is a must. hugs to you and your family !Good luck with your father.
Hi. I am 72 and have been diagnosed with MG since aug of 03. I have seen photos prior to that and realized that It had been coming on way before that. Shows in my smile. Actually my smile is practically non existent and I am conscious of that.
A neurologist is a must. He will do a tensilon test. That was the clincher in my case. It is real accurate. If you have any other questions or concerns please ask away. My medication is helping me a lot. hugs and good luck with your father. I had commented a while back and nothing showed up. Much longer. lol. hope they both don't show up.
Hi Garyc,
Thanks so much for your well wishes :) and sharing with me what you have been through.
At the moment, my dad is taking mestinon and prednisone. He's also taking potassium and famotidine to 'counter' the side effects. The thorax scan results came back and confirmed that he has thymoma too. Hence, it's a wait-and-see mode in the meantime...waiting for him to regain much of his strength, as a thymectomy might be necessary. Will bear in mind the alternative Imuran medication if need be.
Garyc, thank you very much once again.
Well now I have a Staph infection in the right side of my face. Several little bumps. We did a culture scrap and my Dr says it isn't MRSA(Super bug). So I hope that is the case.
I have been on Imuran(Azathioprine) for close to 2 yrs now. This has been what has helped me the most to recover a lot of my strength. It also has helped tremendously with my eating. The round of medication didn't do much so we are starting a second and also some topical cream. It is a worry since Imuran is an immune suppressant. Oh Well!
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