Originally Posted by Anacrusis
Hi. I would like to be of support to anyone out there with myasthenic weakness despite negative test results and am also looking for some closure as well...
Neurophysiologist and MG researcher October 2011:
´Despite your negative blood tests & negative SFEMG (September 2011) I believe you have had an atypical presentation of seronegative myasthenia which went into a sudden and spontaneous drug free remission (May 2011) which may last up to 2 years. You should take an RNS and retake the SFEMG on a weak muscle (frontalis & deltoid) when symptoms return. I do not believe your symptoms are psychosomatic or that sedatives are the cause of your weakness´
My own conclusions about symptoms after pregnancy are as follows:
1) Zoplicone/antibiotics + heat + repetitive muscle use = severe muscle weakness in an MG pattern. (during an already existing flare up)
2) Reduced medication + cold temperatures + reduced specific muscle use + REST = greatly alleviated muscle weakness.
3) Zoplicone caused 11 months of bulbar & respiratory problems 12-16 hours after each dose was taken (1.25mg daily…. and symptoms reappeared with each challenge dose a total of 10)
Most notable ´episodes´ of fatiguability:
Unable to…..... turn the pages of a book; writing looks like someone else´s at the bottom of the page (that´s still the case); grasp things; strum guitar to end of song; finish a round of applause; almost drowning from sudden deltoid weakness, hold a door open for someone; put make up on with elbows pressed into stomach, piece of rice stuck 20 minutes; tongue weakness; choking on liquids and even toothpaste fumes; epiglottis forgets to do its job; lungs rattling unable to clear; severe breathlessness on repeating same sentence; reading bedtime story like a drunk; chewing stopping halfway through a meal; voice and eyes going in and out of focus; neck weakness; thighs like rubber bands; falling into my dinner plate as the meal progresses........
1) From 2009 until 2011 there was a predictable, almost perfectly exponential progression of fluctuating symptoms yet with such erratic and unpredictable exacerbators from the outside. How does the myasthenia remember or know exactly which position to go back to every time (plus an increment of severity) if there is no permanent damage recorded by an SFEMG?
2) If a sedative could be responsible for 3 years of fluctuating, progressive and fatiguable weakness (mostly upper body and bulbar) then is it possible for someone to go into a significant myasthenic remission whilst ACTUALLY TAKING regular doses of the offending substance?
3) Why would sedatives (Zoplicone & Ambien) cause similar symptoms to antibiotics? (9 prescriptions during 2009)
4) Why might sedatives cause respiratory problems and bulbar weakness 12-16 hours consistently after taking only a 1.25 mg dose?
5) Do normal drug induced side effects follow a fluctuating and PROGRESSIVE pattern?
6) Why, after challenge doses of sedatives, would breathing weakness always precede muscle weakness.
7) Why during flare ups would weakness appear in other totally unrelated sets of muscles than those that were used repetively?
Thank you so very much.......
I will start with- I don't think anyone can give you a clear and scientific answer. Also, you give many details but a lot are also missing.
But, based on my knowledge and understanding of this illness, autoimmune diseases in general, and my own experience I am ready to speculate.
1. You don't clearly say, but I assume that you are a young healthy fit woman, and that your symptoms started during pregnancy/childbirth, lasted for over a year and then gradually got better.
If this is the case, you most likely have autoimmune MG and it is not rare for autoimmune diseases to be effected by pregnancy. The reasons for that are not entirely clear, but we know that pregnancy effects the immune system locally in the placenta (or else you would "reject" the fetus, which is 50% dissimilar to you).
2. spontaneous remissions in MG (as any other autoimmune disease) have been described and can even last for many years. So, assuming that you had complete disappearance of all MG symptoms, and it was pregnancy related possibly (and hopefully) you will never suffer from it again.
3. You do not mention why, if you had significant symptoms for a long period, you were only seen by the MG expert after they resolved. Did you have any tests during that time? were you given any treatment (such as mestinon)? what was your response to it?
4. Any medication that has an effect on muscle contraction or neuromuscular transmission (and there are many) can make MG symptoms worse.
5. MG is usually fluctuative and without treatment it may also be progressive.
So, there is nothing unusual in that.
6. when you use a muscle repetitively to the extent that you reach the anearobic threshold of that muscle, there are two consequences-one is that this specific muscle becomes fatigued and the other that it leads to systemic changes. (such as increased lactate levels in the blood etc).
In some MG patients, other muscles can be sensitive to those effects. This phenomenon has been described by Marry Walker who noticed that when MG patients used their arm repetitively it caused ptosis and generalized weakness.
7. relatively mild weakness in respiratory muscles will be symptomatic (you will feel shortness of breath), the same degree of weakness in other muscles may be less noticeable (unless you try to do some heavy work, but this will also effect your respiratory muscles more).
8. Many times the result of a triggering even will only be seen later (this is why it is so hard to know what causes diseases). Theoretically, the medication could have caused a decrease in the activity of a certain protein, this in turn could lead to abnormal production of another protein and that protein may be what is responsible for the clinical symptoms. It can take time for this to happen.
9. MG doesn't cause permanent damage. that is why, when given proper treatment, someone can go from being on a respirator in the ICU to being completely normal.
10. As I have mentioned in a previous post, the SFEMG may be normal in myasthenia, because quite likely in some patients the problems is not in the transmission of the electrical signal (which is what the SFEMG measures) but in the contraction of the muscle itself.