I'll have to ask my doctor about the Mestinon your on. I've only taken a couple days of these two drugs and so far, don't mind the side effects......but one of them gives me the runs in the early morning after breakfast. As for the water exercise I do, they're not very aggressive. My husband goes in with me, and we do them together. I've used a cane for a year now because of my wobbly legs and imbalance problems. At least with this diagnosis, I now know why my body does these things. I've been giving myself permission to take a nap every day for a couple years too. I nap for a couple hours in the afternoon and that gets me through the evening hours.
Hi had MG since 2013 using Mestinon and steroids 15 mg also metophenolate, had bad experience on friday when to A@E faced drooped eye completely closed could hardly move my mouth, slurred speech was put on 90mgX4 daily it is now mon starting to feel slightly better, this is the first time since 2013 been this bad, I also have SLE diagnosed on 2005. First time on this sight just joined, I live in UK high.
Hi all, I had my chest x-ray last week and I don't have to worry about my Thymus gland....it's not enlarged. I've been taking meds for almost 3 weeks now and my eyes are better. The drooping is almost gone and the distorted vision is better, but still not great. So far, I do not have trouble swallowing, but do have some trouble chewing hard things. My biggest problem is the head drooping forward. My neck muscles are weakened and don't seem to be getting better. The doctor keeps telling me to be more patient as it takes 4 to 6 weeks for the meds to really kick in. I'm having a blood test next week to see if there is an improvement in whatever those little thingies are that are causing a problem. My meds. are Pyridostigmine 60mg 2 times a day, and Azathioprine 50mg 2 times a day. Anyone else taking these?
I'll have to ask my doctor about the Mestinon your on. I've only taken a couple days of these two drugs and so far, don't mind the side effects......but one of them gives me the runs in the early morning after breakfast. As for the water exercise I do, they're not very aggressive. My husband goes in with me, and we do them together. I've used a cane for a year now because of my wobbly legs and imbalance problems. At least with this diagnosis, I now know why my body does these things. I've been giving myself permission to take a nap every day for a couple years too. I nap for a couple hours in the afternoon and that gets me through the evening hours.
Hi, Mestinon is Pyridostigmine, that's what you are on, just wondering why you have been put on two drugs at the beginning of your therapy? Perhaps it's because your reading was so high. I'm so glad you are enjoying you pool exercises, I was doing them before I was diagnosed with MG because I had my 2nd lower back surgery last July. With not being able to drive until recently I have been unable to go. My Husband passed it will be 3 yrs in May. It's hard on ones own. However I will start again now I have started to drive again. I am determined to have my overseas holiday to the UK next year as I do my Ancestry. Keeping up with that is keeping my mind active. My appt. at the Muscle clinic is still on the 26 th of this month. How long before you got your results? Cheers
Hello @mylife, thanks for telling me about the Pyridostigmine. Now I don't have to ask my doctor about why I'm not taking Mestinon like many of the Mayo people are. He put me on two drugs, I think, because my numbers were so high. I had another blood test done yesterday and will find out next week how they are working. He said this Pyrid., will act like an aspirin and give me relief from some of the symptoms in a couple of hours, but won't last. The other medicine will take a few weeks to start working and hopefully will be long lasting. My eyes are better, and my incontinent problems are better too. I'm still wobbly while walking, and my neck muscles aren't much better. I'm impatient about all of this I know and want it gone now! I'm so sorry to hear about your husband being gone. I know how important it is for me to have mine to help me and keep pushing me to move more. Good luck with your muscle test. I got my results right away.....right after the test the doctor went into another room and brought back the print out of how bad I did. Better luck with yours.
I have been struggling with my speech for about two years now. The speech therapist said I have dysarthria. I also have developed some nervous twitches in my mouth area. Anyone experiencing the same?. I have been in two or three sessions of speech therapy and have finally given up practicing at home because I couldn’t see it helping.
I have been struggling with my speech for about two years now. The speech therapist said I have dysarthria. I also have developed some nervous twitches in my mouth area. Anyone experiencing the same?. I have been in two or three sessions of speech therapy and have finally given up practicing at home because I couldn’t see it helping.
Good morning @judigirl1 . Having speech difficulties can be very upsetting and hard to deal with socially. Have you had an opportunity to talk with your doctors about your difficulties and nervous twitches? Could it be related to medications or your disease? Have you also noticed any muscle weakness in your head and face?
You have posted under the ocular myasthenia gravis discussion. Do you have MG?
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I'll have to ask my doctor about the Mestinon your on. I've only taken a couple days of these two drugs and so far, don't mind the side effects......but one of them gives me the runs in the early morning after breakfast. As for the water exercise I do, they're not very aggressive. My husband goes in with me, and we do them together. I've used a cane for a year now because of my wobbly legs and imbalance problems. At least with this diagnosis, I now know why my body does these things. I've been giving myself permission to take a nap every day for a couple years too. I nap for a couple hours in the afternoon and that gets me through the evening hours.
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1 ReactionYes, I've just been to speech therapy swallowing clinic, was diagnosed with dysarthria, have to go back next month for further test,
Hi all, I had my chest x-ray last week and I don't have to worry about my Thymus gland....it's not enlarged. I've been taking meds for almost 3 weeks now and my eyes are better. The drooping is almost gone and the distorted vision is better, but still not great. So far, I do not have trouble swallowing, but do have some trouble chewing hard things. My biggest problem is the head drooping forward. My neck muscles are weakened and don't seem to be getting better. The doctor keeps telling me to be more patient as it takes 4 to 6 weeks for the meds to really kick in. I'm having a blood test next week to see if there is an improvement in whatever those little thingies are that are causing a problem. My meds. are Pyridostigmine 60mg 2 times a day, and Azathioprine 50mg 2 times a day. Anyone else taking these?
Hi, Mestinon is Pyridostigmine, that's what you are on, just wondering why you have been put on two drugs at the beginning of your therapy? Perhaps it's because your reading was so high. I'm so glad you are enjoying you pool exercises, I was doing them before I was diagnosed with MG because I had my 2nd lower back surgery last July. With not being able to drive until recently I have been unable to go. My Husband passed it will be 3 yrs in May. It's hard on ones own. However I will start again now I have started to drive again. I am determined to have my overseas holiday to the UK next year as I do my Ancestry. Keeping up with that is keeping my mind active. My appt. at the Muscle clinic is still on the 26 th of this month. How long before you got your results? Cheers
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2 ReactionsHello @mylife, thanks for telling me about the Pyridostigmine. Now I don't have to ask my doctor about why I'm not taking Mestinon like many of the Mayo people are. He put me on two drugs, I think, because my numbers were so high. I had another blood test done yesterday and will find out next week how they are working. He said this Pyrid., will act like an aspirin and give me relief from some of the symptoms in a couple of hours, but won't last. The other medicine will take a few weeks to start working and hopefully will be long lasting. My eyes are better, and my incontinent problems are better too. I'm still wobbly while walking, and my neck muscles aren't much better. I'm impatient about all of this I know and want it gone now! I'm so sorry to hear about your husband being gone. I know how important it is for me to have mine to help me and keep pushing me to move more. Good luck with your muscle test. I got my results right away.....right after the test the doctor went into another room and brought back the print out of how bad I did. Better luck with yours.
I have been struggling with my speech for about two years now. The speech therapist said I have dysarthria. I also have developed some nervous twitches in my mouth area. Anyone experiencing the same?. I have been in two or three sessions of speech therapy and have finally given up practicing at home because I couldn’t see it helping.
Good morning @judigirl1 . Having speech difficulties can be very upsetting and hard to deal with socially. Have you had an opportunity to talk with your doctors about your difficulties and nervous twitches? Could it be related to medications or your disease? Have you also noticed any muscle weakness in your head and face?
You have posted under the ocular myasthenia gravis discussion. Do you have MG?
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