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Like so many before me, I've been experiencing symptoms that have lead my Opthomologist, and Neurolgist to conclude that I have MG, but can not find support of it through Clinical Tests, so far. I have droopy eye lids in both eyes, double vision, ocular migranes, tire very easily when trying to almost anything and require a 2-3 hour nap every day, and have aching leg muscles starting at my butt and traveling down the back of my legs. Also, am having center of chest tighness, have sore throats and slight difficulty swallowing as the day wears on. (Neurologist also discovered that I also have Neuropthy in both legs).
Had the normal blood tests, and those were negative for MG. Today, did the electical tests, and everything checked out fine there. They drew more blood today, to check for Anit-Musk, and are going to schedule an xray. Mercifully, he has prescribed 60mg of Mestinon, and scheduled my return to see him on September 3th. So, I'm hoping that the Mestinon delivers me some peace and comfort, or at least some kind of improvement as any will be appreciated. I certainly can see why they call this the 'Snowflake Decease', as it's all so confusing, while I seem to be developing more symptoms and feeling worse each week. Posted on 08/13/12, 07:03 pm |
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Give your neurologist a call and see if he won't increase the dosage or the frequency. Mestinon is a relatively benign drug for those who need it. You might want to read the discussion about Mestinon in the Links Group. It will give you more information about what the drug does and Why different people take it in different ways.
The link and discussion is under myasthenia and medications. The link to the links group: http://www.dailystrength.org/groups... b. 
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Good luck green. Sounds like you have seen encouraging improvement! I hope your tests and medical appointments go well.
Best wishes, Gez
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I have seen some "encouraging improvement", though I definately can sense when the drug is near its end, though about an hour to hour and a half prior to the next pill. I'm taking the suggestion of bweeds, in that I'll call my Neurologist on Monday to discuss increasing the frequency.
Looking forward to the CTscan of my Thymus, and getting those thoughts behind me, plus getting the additional drugs prescribed now that I've had some success with Mestinon. Thank you one and all for the continued help and support.
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At bweeds suggestion, I called my doctor about my dosage of Mestinon, as the effect was running out prior to taking the next pill. I was taking 60 mg. four times a day. He now wants me to take 1 1/2 pills four times a day, until I see him again on September 5th.
The other reason for calling him, was that I also wanted/needed to hear about the results of the CTscan done this past Monday. The doctor states that everything looks clear! This is fantastic. As a result of all blood tests being clear, and all the electical tests were clear, but still having symptoms, he believes that I simply am having Ocular Myasthenia Gravis. But, whatever the case, I know how totally fatigued I am, which was dramtically noticed during and after my cancer treatments last year. Then, with my droopy eye lids, double vision, sore eyes, leg pain and over all weakness, I have felt pretty useless. So, when I see him in September, we'll continue talking about my MG, but then move on to the Sensory Polyneuropothy. My recommendation, to all my friends, is to call your doctors when you've had a test, rather then waiting weeks before your next appointment. We've paid for the tests, and information can help ease our anxiety.
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