Wife Diagnosed w/Myasthenia Gravis (Looking for Perspectives)

[Panik]

So I know health isn't the usual topic on this forum, but over the years I've come to appreciate the vast diversity of opinions and thoughts that people share here. Some of them I agree with, a lot of them I am neutral on and some are flat out opposite of my own personal opinions. Regardless, I've generally been able to learn something from the entire spectrum.

About 5-7 years ago my wife(43) was diagnosed with having Ankylosing Spondylitis - which is an autoimmune disorder causing arthritic changes in her joints, especially those in her sacral area. It was a huge and scary mental adjustment for both of us, and its been painful for me to watch her have to make adjustments to how she would like to live her live.... namely accepting limitations due to the joint pain it causes.

Since that time we've lived with both that diagnosis and an understanding that not all of her symptoms were adequately explainable via that diagnosis. A couple weeks ago my wife hospitalized herself due to severe pain in her left shoulder and chest along with associated muscle weakness and overall lethargy. The results from that hospitalization revealed tears in both her shoulder and scapular joints. A follow up appointment from her rheumatologist resulted in a diagnosis of Myasthenia Gravis. Apparently MG is an autoimmune disorder that disrupts the communication between nerves and muscles causing weakening of the skeletal muscles and can affect things such as talking, swallowing, walking, and breathing to name a few.

Since that time it's been a very scary adjustment watching my formerly very active wife have to spend the day in bed because she over did things at work or at home the day before and is too weak to move around much. At the far end of the spectrum its terrifying to realize that at some point if it gets severe enough that she may require assistance with daily care activities such as dressing and grooming, or should she have an "attack" need someone to breath for her.

I do realize that the above examples are at the far end of the severity spectrum and that she is now taking medication.... it's just that even with the medication she's had episodes at work where she's needed someone to help her sit down for a bit, and that the medication wears off rather quickly.

I'm not looking for any solutions here... just wondering if anyone here has dealt with this with a spouse/loved one and might be willing to share their perspective.

 

[ponytug]

I want to extend my sympathies. It is not easy living with autoimmune diseases or spouse who have them. I can't give you specific medical advice, not being an MD.

I would ask if she has had a full work up by experts in myasthenia gravis. Sometimes there are researcher/MDs who have a few tricks up their sleeves based on their work. An expert down your way helped me out. In particular, I wonder if a work up on her T-cells and thymus activity has been done, as the thymus is often a driver of the disease. Was she diagnosed via antibody testing, imaging, or electromyography, or a combination there of, or something else?

However, I can share that my experience with immune driven diseases like myasthenia gravis is that not overdoing things ever, reduces the number and intensity of autoimmune "flares". It is hard not to be stressed about a life altering diagnosis, but the immune system responds, unfavorably, to stress, I think that it is important to keep the immune system as calm as possible by it getting stressed. (Hard, I know)

Does her therapy plan include antibody depletion (plasmapheresis), IVIG treatments (or both), in addition to medications? (And which medications? Acetocholinesterase inhibitors, and/or steroids?)

I know it is hard to be accepting about these diagnoses, like your wife's earlier AS diagnosis, I think it is always worth getting second/third opinions in my book, e.g. the Cleveland clinic, or Mayo in Rochester, MN. Above all though, but with immune disorders, keeping life low stress is vital in my opinion.

Best of luck in all of this.

All the best,

Peter

 

[jyoutz]

I want to extend my sympathies. It is not easy living with autoimmune diseases or spouse who have them. I can't give you specific medical advice, not being an MD.

I would ask if she has had a full work up by experts in myasthenia gravis. Sometimes there are researcher/MDs who have a few tricks up their sleeves based on their work. An expert down your way helped me out. In particular, I wonder if a work up on her T-cells and thymus activity has been done, as the thymus is often a driver of the disease. Was she diagnosed via antibody testing, imaging, or electromyography, or a combination there of, or something else?

However, I can share that my experience with immune driven diseases like myasthenia gravis is that not overdoing things ever, reduces the number and intensity of autoimmune "flares". It is hard not to be stressed about a life altering diagnosis, but the immune system responds, unfavorably, to stress, I think that it is important to keep the immune system as calm as possible by it getting stressed. (Hard, I know)

Does her therapy plan include antibody depletion (plasmapheresis), IVIG treatments (or both), in addition to medications? (And which medications? Acetocholinesterase inhibitors, and/or steroids?)

I know it is hard to be accepting about these diagnoses, like your wife's earlier AS diagnosis, I think it is always worth getting second/third opinions in my book, e.g. the Cleveland clinic, or Mayo in Rochester, MN. Above all though, but with immune disorders, keeping life low stress is vital in my opinion.

Best of luck in all of this.

All the best,

Peter

Another thing I would add is that research clinics and university medical centers often have access to experimental drug trials for free. And these drugs often do prove effective and are later approved for general treatments.

 

[plowhog]

Something to consider:

I have seen ankylosing spondylitis reduce in severity from a regular stretching and light exercise program. I am also not an MD, but I have learned from practical experience that if the body has internal inflammation, it can lead to lots of future problems plus can drag down energy levels and vitality a lot.

So, I'd suggest that you ask if physical therapy would be beneficial. If so, the therapist might be able to recommend some things that will help with energy and vitality.

Good luck to you ... I hope you find some things or treatments that are effective!

 

[dstig1]

My Dad had it. It was controlled pretty well, as I recall, with medication. But at the beginning the nurses in the hospital almost killed him as he couldn't breathe at one point and they seemed to not be clued in to what was going on and just told him "to relax and breathe". Well relaxing had nothing at all to do with the situation and he needed medication. They finally figured it out, but he was pretty pissed that they were giving him the "there, there" pat on the head while he was struggling to breathe due to this. But the good news was after they got all that sorted out, I don't really recall him having major issues with it in the long run. Hopefully a similar situation plays out for your wife in the long run.

 

[m7040]

Wife has RA also an Immune system disorder that has been difficult and unfortunately not diagnosed early on. She is on immune suppression medication that are absolute a life saver for her to limit the damage to joints and vital organs. She also has days that are difficult because of some activity the day before.
Finding the right combination of medications has helped. Stress can cause inflammations and cause flare ups so minimizing it is paramount. Learning to live with it has been a long journey.
She scattered her ankle and had to be in a nursing home. Had to modify the house to take her back home. But we are managing reasonable well now with good follow up by specialist clinic.
Installed wheel chair lift in the van but she has after knee replacement been able to get in without using the lift

Getting the right specialist clinic was likely the best thing we did. Looking into cost of medications and finding the right ones can be very challenging and a good clinic can be very helpful.

I know MG is not the same as RA but I think the journey to learn to live with it may be similar