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Feb 14, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

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

Jan 30, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

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.

Jan 30, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

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?

Jan 30, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

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.

Jan 22, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

I have tried to find the drug Metophenolate you mention and cannot find that drug .have u mis spelt the word? Also what Steroid are you on? Cheers.Marg.

Jan 22, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

Could I ask you to put these MG ‘s onto the other ones I have been in touch with? Thanks Marg.

Jan 22, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

Hi Chorba, may I ask how old you are ? I am 80 and if u are young I feel bad for u going through that. I’m not nor have been that bad. Have you been on the 3 meds since you were diagnosed? I am only on 60mg x3 daily of mestinon . The Specialist says the higher t he dosage is may cause me to have worse and more side effects. My MG only started in Sept last year so it’s early days for me yet. I live in NZ and we don.t get many MG cases here. About 1 in 200.000 apparently. I am able to cope daily if I wait until the Med has been taken 1 hour however I started to drive again 3 days ago and I’ve over done it so have learnt my lesson, if I need to go in the car do only a 1 hour then home. I don’t live more than 10 mins from town. I think we do have to learn just how much we are able to do then rest which is so important with MG. take care, chin up. Cheers Marg.

Jan 19, 2018 · Occular Myasthenia gravis (MG) in Autoimmune Diseases

I have been on Mestinon since I went into Hospital 29th November 17. I had an episode of double vision about 19 months before this episode that started in Sept 2017. that would have been in Feb 2016. It took about 4 to 5 months to clear. My Appt. with the Dr for the
Muscle test is on the 26th Feb 2018. I will let you know how I get on. My Neurologist said my muscle strength is pretty good but my muscle tone is what is bothering me. My legs have lost all the muscle tone and are almost twice the size they were. Although I have to remember that for the past almost 4 years I have not been able to excercise because of my two back Surgeries I’ve had in Aug 2015 and again in July 2017. I wish we knew what the cause was that sets this off.