Were you in remission to then have your MG symptoms return?
Have you been treated for Myasthenia gravis and entered a period of remission, but unfortunately, months or years later, your symptoms returned?
How is it impacting your life if you are currently dealing with this? How is this flare-up different than your MG symptoms before you were in remission?
Suppose you have dealt with this in the past. What advice do you have for staying strong and accepting this unwanted and possibly unexpected hurdle?
Hello
How are you doing with your recent flair of symptoms? I too had a flair a couple of weeks ago (slurred speech, droopy eyelids and double vision). Once I got a round of IVIG my double vision and droopy eyelids seemed to have gone away within a week. However, I'm still struggle occasionally with slurred speech which is beyond frustrating.
The way I stay strong is through faith and my kids. I have little ones 11yr, 4yr and a 5 month old. I'm a stay-at-home mom and my husband is away for work weeks at a time. We also moved from California to Oklahoma this year away from all of our immediate family (which were the people we went to help watch the kids). It's hard and I have to tell myself that letting my health decline is not an option for me because my children literally depend on me and my presence here. If I end up in the hospital which would cause my husband to have to take a week or 2 off work to tend to me and the kids...ugh it's unthinkable to me.
How do the prism glasses work for you? I went to an optometrist that recommended them for my MG, but I've heard so many mixed reviews I just never got them. -Jazmin (team member)
I have the plastic prisms (Fresnels) that stick on the inside of my glasses. I have a weaker one that helps with closer vision and a stronger one with sorts distances. I am still allowed to drive, thankfully. They work well for me.
The only issue I have is that the severity of my diplopia is a little variable.. sometimes I can get away without prisms for computer work, sometimes not.
I am also long sighted and I need different glasses for different tasks, so have to keep swapping my prisms over. It's a pain in the arse. I am trying to find a supplier of Fresnels so that I can top up my supply, the NHS would only allow me the two.
Mentally I am coping fine, apart from getting tired and some headaches due to eyestrain. I am a little concerned for the long term, this episode has arrived out of nothing and I gather that ocular MG often develops further.. trying to decide if my achy shoulders (for the past few weeks, and predating the diplopia that arrived with a vengeance 10 days ago) is a symptom or not.I see. Thank you for explaining that for me. Do you have diplopia in both eyes or one? I'm glad that the prism glasses work for you. I don't have any so I can only imagine the frustration you have when it comes to constantly changing the lenses.
You should definingly ask your doctor about your shoulder pain being related to the diplopia or medication. For me when I was having my diplopia, I developed server headaches and a stiff neck in which the pain from that shot down my back. It was horrible I told them I didn't want any muscle relaxers because that can also cause more problems, so they gave me a topical cream to relieve the pain. When the pain in my neck and back was tolerable, I took that as an opportunity to stretch those muscles/area of my body.
Mine came back about a week ago after four years, having had two episides and possibly a very minor third some years back, just didnt realise it at the time.
Fortunately, it's relatively mild and seemingly only of the ocular variety, though i have felt tired and achey (esp shoulders) in recent weeks - I don't know if this is connected.
What I have found is that the double vision has been very testing, I feel mentally drained as my brain tries to process whats coming out of the eyes..
I saw the opthalmics on Friday at the local eye hospital, she fitted two pairs of my glasses with prisms (One for long distance, and a weaker one for watching TV 2.5m away.) But I'm finding quite a bit of variability and whereas earlier last week I was fine using a PC screen less than a metre away, it's now a struggle unaided and I nhad to take the prisms off my TV glasses and use for my computer ones.
So I guess I'm asking the same question as Jodi above....
