Any advice would gratefully received

[Pishpash]

Saw neurologist today he confirmed mg antibodies positive. Brought half the pharmacy home with me. Starting tomorrow, it's taken all day to figure out what to take and when. Been on mestinon but not currently working for me at the moment. Really bad double vision and droopy eyelid following a diabetic retinopathy exam on Friday. The first time I have had those symptoms. My main symptoms are related to the jaw. Can't eat or speak without support.

Any tips to stop me making newbie mistakes would be much appreciated.

[CDreamer]

Hi Pishpash - I remember that feeling very well. FIrstly - which meds apart from Pyridostigamine are you on? Steroids I can’t say too much about as I have thankfully avoided them as I was prescribed Mycophenolate which did work for me but it took about 6 months to really kick in and for things to dramatically improve enough so I could drive, eat, climb upstairs standing without help or cook and eat a meal.

At this time - rest is going to be your best ally, rest, rest and more rest.

Take your mestinon before you even get up. Did your neurologist allow you to self medicate or are you on a prescribed dose? Many people seem to be told 3 a day which was absolutely not enough for me but everyone is very different and unfortunately doctors all have different policies on self medicating. Thankfully mine does so I can take anything up to 8 tablets per day. After much experimentation, now I am stable I take between 4-6 per day, on a really good day now I am stable I can get away with 2.

Double vision - 2 things that helped me greatly - buy and wear a patch - alternate eyes. We’re you referred to the eye clinic? They were the people most able to suggest how to cope and supplied me with patches. I used for about 3 years when DV struck or whenever I felt Ptsosis coming on which is always the pre-cursor for DV and a very big clue that you have done too much so have a rest. I cut my Mestinon in half so as soon as I have Ptosis I take just a small amount, close my eyes and that usually is enough.

The second thing which helps - I found - was wearing a visor or peaked cap when outside as the light affects me too much ditto with certain old fashioned lighting such as hospitals, supermarkets etc. My eyes will close completely and just not open if I don’t when I visit the hospital.

Things I wish I had known when diagnosed 5 years ago:-

That the biggest factors are lifestyle - autoimmune diseases are caused by an over active immune system which has was triggered by inflammation, often arising from poor gut health. Overhaul what you eat and keep a symptom diary of everything you eat as many can trigger an inflammatory response. I found that gluten and dairy did affect me so cut them out of my diet completely for just over a year and improved dramatically. I now take them occasionally but really don’t miss them.

Stress - of any kind makes things a lot, lot worse. Practice stress management.

Sleep - good quality sleep is essential for healing so don’t compromise on sleep. Sleep as much and as often you need. I think I was sleeping for about 18 hours a day for the first few months.

Don’t expect improvement anytime soon - even if you have been prescribed steroids it takes time for Myasthenia to stabilise. I was told 2-3 years and really it was only in the 4th year and when I cut gluten & dairy I saw any improvement.

Learn to pace yourself - only do the essentials in life - everything else can wait. Sometimes getting out of bed, showering was all I could do, by which time I had to go back to bed.

Get support - most family and friends really don’t get this and want you to get better and cannot understand that whilst you may be ok one day, you won’t be the next. You will lose friends because you can’t do what you used to. You will find people who you would never have thought could be so kind and understanding, but are. Ditch the friends who don’t understand and distance the family who aren’t supportive, worrying or trying to educate them don’t work. You can only change your response to them. Focus on getting strong.

Avoid infections - especially shingles and chicken pox, mumps, measles and any other serious diseases by avoiding crowds whenever you can. I always wear gloves on public transport now or whenever I have to venture into public places. Infections are really serious for us and even a common cold will still put me in bed for over 3 weeks so tell people - if you have a cough or a sneeze - please let me know and stay away from me.

Know what a Myasthenia crisis is and symptoms and when to get yourself straight to hospital. Know the difference between a Myasthenic crisis and a Cholonergic crisis is, I have an article somewhere and will post as and when I find it.

Always carry or wear some kind of Medical Alert and join Myaware and get their Passport and Medical Alert cards.

Always check EVERY med any doctor suggests for you against the Myaware Drugs list. DO NOT ASSUME THE DOCTORS KNOW. In my experience they don’t. I now have a Red Alert on my medical file with drugs I must not have since several of the drugs I was taking for my heart, seriously exacerbated my Mg. myaware.org/drugs-to-avoid.

Expect life to change, adapt and focus on the things you CAN do, even if it’s only for the shortest time.

Things will get better, but slower than you would want or like. Getting frustrated with that does not help.

Be very careful with swallowing - I found taking your meds with some sort of viscous fluid such as something like a smoothie or yogurt drink is much safer as in the begining I couldn’t swallow and there is a danger of aspiration so do take care. Tilting your head forward rather than back also helps. If you need to, stay on liquidised foods, boring but safer. Chewing can often be just too much for us so avoid any chewy foods such as steak. Batch cook when you can so when you aren’t good you always have something.

5 years on and I am improving all the time and would now say I am almost normal, most days. The hardest was learning to pace myself as I always wanted to do more than my body did. I now know the cues of needing to stop so that’s when I take half a Mestinon and go rest for 30 minutes, and now that is enough.

Hope some of that very long blog helps a little. Any questions - just ask and hopefully someone will be around to help.

There also some really good FB pages for newbies and people with different types of diagnosed or undiagnosed Myasthenias which are great for support in the early days.

Best wishes CD

[Pishpash in reply to CDreamer]

Thank you so much, that is hugely helpful. I am also battling with T2 so looking forward to high sugar and weight gain. I eat keto to control the T2. I rely on dairy. I will print out your post for information.

[CDreamer]

PS - Mestinon is not a treatment - it only controls the symptoms temporarily and has a very short effective period of between 2-4 hours. Often taking a little more often by cutting the tablets can be more effective but remember to take with or within 30 minutes of food to limit or avoid stomach issues.