Mayo Clinic Connect
Wondering if anyone has Occular MG & what meds they are using
Liked by chorba
Hi @mylife and @750scar78,
I’ve enjoyed reading the support and information you have shared and provided for each other on Connect. This is what Connect is about, and it’s so great to see it in action. Thank you!
Mayo Clinic also has some very detailed care options for MG; here’s some information which you may find helpful:
I’m confident that @gretagean @lynnes @dschmidt and others will join this conversation and share their insights.
@mylife, may I ask what meds you’ve been prescribed? Mestinon seems to be the most common choice for MG. @750scar78, if you wish, please let us know if you have any questions after visiting with the neurologist. We look forward to getting to know both of you.
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I’ve been quiet for a while because I just don’t want this…..and maybe I don’t have it. Anyway, I did have the muscle/nerve test and didn’t fare well. Now I’m waiting on the results of a blood test. I should get it on Monday 29th. My neuro doctor says you can have MG without the normal symptoms too…..just great! I can’t drive yet as my left eyelid keeps drooping. My right eye seems to have corrected itself nicely though. My husband has been really great about driving me everywhere. Does a headache go with this disease? I seem to get them lately along with my drooping head……oh so weird!
@750scar78 Hi, 750… Your note caught my eye just now, and I could not resist answering, at least partially. I have hATTRwt, a primary systemic hereditary form of TransThyRetin Amyloidosis, a wild type. That is, no one can guess what mutation of the protein will show up next, if any. And because no one can guess the next mutation, the prognosis is wild, and so are the potential treatments. But what caught me is your question about the headache and the drooping head. Now, I don’t have the headaches behind the eyes any longer, or the drooping head. But I just know that tomorrow morning when I wake up I may have another sign or symptom, from another broken toe to black eyes to purple petechiae all over my body. This is a progressive disorder, and it cycles through these things frequently. To date I can count about 250 symptoms and signs which are recognized as part of hATTRwt, or something similar. By the way, there is a dropping head disorder very common in southern Africa. I do not know much more about it, but it is mostly in children, and is very serious. Some say it is part of the Amyloidosis family, but I have not been able to check that out. Anyway, hang in there. If you would like, I have written up some of my story at https://bit.Ly/1w7j4j8 under “Amyloidosis”. There is other stuff there as well, and it is all free. old karl
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.
@chorba Hi, there. I have a sister with Lupus, and another with MM and one with Crohn’s, and I have hATTRwt. These things just seem to keep going, no matter what I do to try to stop them. The best thing I have done is start methotrexate injected. But anyway, my hATTRwt has spread all over my body, and I just keep getting a little worse. The symptoms and signs just seem to keep slowly adding to themselves. My dementia is growing, and my GFR and other signs are showing that the disorder is progressing, but slowly. Anyway, just know you are not alone. old karl https://bit.Ly/1w7j4j8
Hi all….well I finally have been diagnosed with MG…the blood test showed the problem. I started on two different drugs today and the doctor seems to think they will help. One is Pyridostigmine, 60mg 2 x day…..and Azathioprine, 50mg 2 x day……The doctor will do blood tests to see if the drugs are working and of course, by how I’ll be feeling. He seems to think that by the time I see him in another week, I should feel better just by taking the Pryidostigmine. He says that is a fast acting drug. The other drug may take some 6 to 8 weeks to show improvement. My neurologist says I can probably improve my muscles with exercise, so my husband and I have joined the “Y”. I don’t want to do the machines in the GYM, so we are doing exercise in the pool.
Liked by John, Volunteer Mentor
Hi all, I’m new here and wondering about certain symptoms I’m also having. About one year ago I started with the double vision. I saw my eye doctor and he couldn’t find anything wrong. It cleared up in a few weeks at that time. Since then it has re-occurred with the droopy eyelids now….both eyes…and distorted vision. I had to stop driving because of this. Also my head wants to drop forward all the time. I also have some urinary and bowel problems. I just saw a neurologist and he thinks it might be Myasthenia Gravis. I will have a nerve test done soon. I’m 75 and wondering why now? I also read that it starts in younger women…..any more info will be appreciated….
My blood test showed the acetycholine recptor …I think it’s called….at 254 when it should be at 0.3…..the doctor said it was way too high….hopefully the new pills I started today will help with this…..I’ll have another blood test next week hopefully with better results….
Wow, my Dr thought my blood test result was high at 20.00. But yours I’m finding it hard to get my head around, so who decided to get the test done, you said your Dr. said it wouldn’t show MG ? I’m so glad now after so long you are on Meds. What are you on?
Have you got the results of the Nerve test yet? I go for mine on the 26th Feb. Does it hurt like my Neurologist said it would? Take care.
Another thought, has the Dr arranged for you to have a Cat Scan on your chest to make sure all is ok with your Thymus gland?
I’m seeing my neurologist on Friday and I’m going to ask about my Thymus gland also. I had a chest X-Ray done in late October 2017. I wonder if the thymus gland would show up on that…..
Are your only symptoms your eyes, that you say you have Occular Myasthenia gravis
Hi @mylife, this sounds exactly the way mine began. It was in Dec. 2016 that the double vision started. What is really strange about all this, is that my husband had the double vision about a week before me! His cleared up in a couple of weeks, while mine took about a month. We both went to our eye doctor but he couldn’t figure out what the problem was. Mine occurred again two more times…again the eye doctor couldn’t say what was causing it. Then in Nov. 2017 the drooping eyelids began along with the vision problems. I went to my GP who thought it might be 6th or 7th nerve palsy, but wanted me to see a neurologist for further examine. After the nerve/muscle test and the blood test, he diagnosed me with MG and I just started the pills. My right eye has been good for a couple of weeks, and my left eye is coming along too. Hopefully now that I’m on these pills, my neck/head drooping and pain will subside too.
Hi again, so glad u r at last on Meds, I haven’t heard of Azathioprine (Imuran) it’s other name, it’s interesting to read what it’s normally for and the Side effects. I always look up all drugs I’m put on, probably as I’m an ex Nurse, and I’m not afraid to ? The Doctors. I was advised not to do any major exercises until I am more stable with my MG. To do water exercises and only in the gap when the Meds have kicked in and don’t over do it. I find I need to rest a lot during the day as the Mestinon 60mgs x 3 daily does not last very long 1 hour to kick in and another 2 hours before I need to rest. I find I am able to cope with the help of my family.
Liked by Teresa, Volunteer Mentor
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.
I’d like to introduce you to @socalgal @gretagean @lynnes @dschmidt @dogmamat @iggeez1416 @whtwater @bea2377 @sunshine56 who have also talked about similar symptoms with MG, and can share their experiences with you.
I’d sincerely encourage you to view this discussion, https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/, where @gretagean has shared some incredible information about diet and additional treatment.
@chorba, are you having problems with swallowing, as well?
Yes, 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
Liked by Kanaaz Pereira, Connect Moderator
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.
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