Measuring my own myasthenic weakness
 

As well as measuring distance of focus, counting steps, raising arms out sideways, previous swimming exercises with ladies many years my senior, (as some of you already know) I´ve been using my handwriting to record myasthenic weakness/strength just for my own records.

When in 2010 I complained to my doctor that I could no longer tie a shoe lace, thread a needle, open a packet of chips, peel, squeeze my own toothpaste, write my own signature to the end of it, – he did not ask me for a sample of my handwriting. Had he asked for one, it would have looked something like sample 1.

Sample 2 is from 6 months ago and I remember feeling an overwhelming sense of weakness after 4 lines.

But sample 3 from a few days ago, is what surprised me the most. It is closely reflective of how I feel today and gives me a good visual benchmark for future reference.


Do you have ways you use to measure your own myasthenic weakness?

Now that you mention it - Anacrusis, at times - my handwriting (too) is greatly affected by Some Type of Weakness.

This is confusing to me, MG medical articles typically state that MG affects proximal muscles (muscles closer to the body). True to form, my eyes, neck, mouth, throat, lungs, upper arm muscles, hip, lower back and upper leg muscles have all been affected at one time or another with MG muscle weakness.

In my little non-medically trained mind, I think of hand muscles as being distal muscles, which from what I have read, are typically not affected by MG. But overuse of hands and lower arms (for me) causes problems also. I can start out writing holiday cards with a flowy, very attractive "script" and after a couple of cards the writing deteriotates into a miserable scribble. Sometimes a pint of milk is too heavy to hold in my hand. And "things" just slip through my hands. Can't hold books to read - I need to prop them. Hmmm.......are the hands weak because of weak shoulders and upper arms that are needed to support them? Hmmmm.........

I have two one pound weights which I have recently decided to start exercising my upper arms with. (Muscles have atophied greatly). This exercise will also work on my weak hand muscles. Think I will chart progress (number of repetitions) on an excel spreadsheet - which could of course, show occasional "slips" or "flat lines" depending on if it is a "good MG day" or a "challenging MG day". Hopefully, the "big picture" will show an improvement. Of course, I know I will need to "pace" myself during this new adventure. Meaning: STOP and rest when the muscles start to falter. (Instead of continuing to PUSH ON as I would have done in my previous more athletic days). The "can do" attitude of "pushing on" and not listening to my weakening body is what helped crush me into my first crisis (along with a reduction in prednisone).

Your idea is a grand one! Thanks for the inspiration.

Anacrusis
Did you notice any other factors in your life when you were measuring your handwriting? Less Stress? Illness - other than MG? Better weather? Kids or no kids around? I know my hand writing is complete doggy doo doo when I am very tired. And the doggy isn't even cute.

SoftTalkerSue

You are right, but writing or even using a regular computer mouse requires the use of more proximal muscles, not only the distal ones.

In order to write you have to keep your arm above the paper, you also need to move your hand from one side of the paper to the other. for this you need to use the muscles of your forearm or even your shoulders. We normally don't notice having to use those muscles because they are much stronger than what is required for this task.

The effort of writing also depends on the pen you use and the way the weight is balanced between its top and bottom. Some pens are much heavier on the top and then you have to resist their pull down. Others are relatively heavy and require more force to be moved as you write.

Try this: rest your arm so it is fully supported on the table and then only move your finger tips or the palm of your hand.

Now do the same, but this time slowly move your hand from side to side.

Now try to do the same thing while holding your arm slightly above the table.

I can easily type with my arms fully supported and use a laptop or trackball mouse. But, I can't use a regular mouse or a less soft keyboard for more than a few moments.

I can only write with cheap light-weight pens. (which is an economic advantage :) )

Anacrusis, It sounds like you're trying to find just the right algorithm of "tests" to show weakness so that you can control MG. ;) I hope you know that I'm not putting you down for that. You might spend all of your time measuring instead of living!

MG can affect any of the 640 skeletal muscles, including the hands. Alice is right about how many muscles work together for one simple task. Just bending over to pick something up can really tank my legs. My diagnosing neuro did that test - that no other doctor did - and I was surprised at how quickly my legs got weak. When you bend over, your legs are supporting the rest of your body.

Sitting and talking, for example, can tank both my breathing and bulbar muscles very quickly. And forget about holding a phone. I usually have to put people on speaker in order to talk. That takes both proximal and distal muscles. And right after I was in the hospital for my MG crisis, my hands would contort from being so weak just holding an object for a short period of time.

Other tests are sipping water, looking sideways to see how quickly you get ptosis shifting from one eye to another, holding arms out in front of you, etc.

I'm more concerned about you getting enough treatment to manage your symptoms. Are you still trying to find a way to "prove" you have MG?

:hug:
Annie

Hi Sue,

My weakness started in the deltoids and then spread down to my finger muscles and other areas. It is interesting to suddenly be aware of and specify exactly which muscles are involved in simple acts like clapping or holding a child´s wriggly hand when the act becomes myasthenic. I can point to the exact areas of weakness although I may have to look up the actual name of the muscle. Like Alice said there can be more muscles involved than you think. With the handwriting I found there were problems in at least 5 muscle areas including something going on around the 3rd & 4th digits.

Thanks for inspiring me back, Sue!

It was a coincidence that I read your post the same day as 3 weeks had passed without symptoms. I had been conducting my students yesterday and noticed my arms heavy (easy to spot with conducting!) especially around the deltoid areas. So I decided to check if the hands were also weak by doing another handwriting sample. (and no stress, no disturbances, no difference in temperature etc) This is what I came up with:

1) Sample 1 = YES!!!! Handwriting also myasthenic at the same time as deltoids are weak
2) Sample 2 = Oh!!!! Mestinon helps as usual
3) Sample 3= Oh!!!! After a 4 hour period writing is fatigable once again

Cooling the arm helps by using ice packs but I never thought to heat the arm up and see if it´s worse – No and I´m not going to do that!

Incidentally, It looks like I had 3 phases of effectiveness and ineffectiveness of exercise:

1) It severely exacerbated muscle fatigability any time I tried it over the course of approx 3 year period. Physio told me he was worried if he gave me an exercise program he may do some damage whilst he thought the problem was a neuromuscular one and he didn´t know which one.

2) It felt like a neutral phase took over where it was generally OK to push water in a swimming pool with arms (not actually swim!) but the exercise wasn´t going anywhere. This lasted quite a number of months.

3) Exercise has started to be beneficial and positive. Muscles no longer feel they are in the minus.


Good luck with your weights, Sue. (By the way have you taken photos of your presently atrophied muscles just for your own records?)


Anacrusis :hug:

Annie.....

In a way I was trying to show the opposite!... my gradual strength increase over the last few years! Do you know – I think for those who are undiagnosed, measuring for yourself is a tool that aids retention of your own sanity as well as making a file for future reference. I have a far from scientific mind and doing the odd measuring experiment has really really helped me to summarize what has and make some sense of what is happening whilst having done this..... ´solo trip up Mount Everest and back down again´ without ever having had a neuro partner.

I was wrong about thinking that the handwriting reflected my core energy levels as it doesn´t. Nevertheless there are gradually less and less entries of symptoms in my own personal diary and more and more diary entries of various activities. Despite isolated episodes of myasthenic weakness my energy levels are continuing to rise as well as there being more and more predictability in planning and fullfilling short social engagements ahead of time.

I was trying to remember exactly what you had said in a previous post about MG affecting more than just the´traditional´muscles, and then you answered. Thanks!
In that case, I wonder what people´s most unusual MG muscle affected might be…

I also remember having a really old phone but without a speaker and had gotten used to laying on the sofa with my phone pressed to my ear on a pillow to talk with my husband....´hands free´;) The arm could manage to hold the phone 30 seconds absolute MAX at that time and with elbow pressed into hip bone :(

About treatment – In one way I feel strongly about NOT taking Mestinon without any supervision whatsoever. In another way I know some people who are worse off than me do not get access to it or have it taken away and I´ve read horrendous stories about the consequences. In yet a third way. I don´t think I need it regularly and wonder if saving it for a rainy day will actually preserve its efficiency so to speak. If at some point in the future I get a full on myasthenic crash like I´ve read people get after long remissions then I can start with this more ´innocent´ drug without having had my body needlessly use up it´s ´performance potential´.

About proving I still have MG! Thank you for asking such great thought provoking questions, Annie! Actually no – at least not in this post! With my great energy levels, my problem is more…. Should I keep my appointment with my doctor tomorrow or not and ask for a referral to a pulmonologist? When I looked back at my post about breathing problems on the flight descent I had 3 weeks ago. You know what? I realized I had forgotten just how bad the symptoms were and how the brain just decided to´move along´the minute they resolved. Then again I haven´t had any respiratory symptoms whatsoever since that post - just a tiny cough here and there where saliva is catching because of the freezing cold temperatures.....

For once I am not trying to prove anything just interested in measuring, and how others do it. And no! Most definitely not at the expense of living my life, at least not these past few weeks :Dancing-Chilli::Talkative::Starvin::Head-Spin::Excited::trampoline:


Anacrusis :hug:

Anacrusis your understanding your own MG and how it changes and that's the most important part even without a Neuro when all my symptoms began I had my fingers lock on me or freeze sometimes still happens as for writing I use to try and write when MG was very bad but couldn't manage it
By recording so much info about your condition you can see how your doing and improving
And works for you
Alan