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Myasthenia Gravis

Purpose:

I have Myasthenia Gravis (MG), a neurological disease. The reason I'm "publishing" what follows is that I struggled for three years with increasing debilitating symptoms before I was correctly diagnosed and treated. I want to help others in such a condition identify MG as a possibility for subsequent proper diagnosis and treatment.  In most cases, including mine, either the MG symptoms can be suppressed or eliminated so that a fairly normal lifestyle can be maintained. That's the state I'm in now. As far as I know quality of life can be improved in all cases using modern medicine. There are also websites that suggest holistic treatments. Having MG was considerably worse only a few decades ago with a very high mortality rate (inability to breath). The current mortality rate is almost non-existent.

A note about this webpage. It is written somewhat as a chronological log. Some events may be OBE by what follows.

Until the disease is diagnosed and treatment stabilized, it can be a pretty frightening thing to experience.  In my case,  I was only marginally functional by the time the diagnosis was made. In seeking help, I went to a wide variety of competent doctors over those three years with resulting diagnoses that generally took some form of "I've never seen those symptoms before."  Untreated, the disease is progressive. My symptoms increased in quantity and intensity to the point where quality of life was pretty poor.  Eventually I had enough symptoms of sufficient intensity that I stumbled into the right place for a correct diagnosis.  My symptoms are systemic, and therefore I am being treated by a general neurologist.

The Disease:

Myasthenia (in English-"muscle weakness") gravis (-"grave") is a neuromuscular disease characterized by seeming weakness and fatigue of the voluntary or skeletal  muscles.  Muscles are suppose to contract when commanded by nerves. The process is controlled by Enzymes which are protein modules that make or break chemical bonds. The way the process is suppose to work is that when a nerve wants to command a muscle to contract, the nerve releases a protein molecule called Acetylcholine. When this module is placed in contact with a muscle, it causes it to contract. The muscles receive the Acetylcholine through "receptors" located at the nerve muscle interface.  The more Acetylcholine produced and/or the more receptors available, the stronger the contraction. 

To stop the contraction, the Thymus gland releases a different enzyme that "digests" the Acetycholine which then allows the muscle to relax.

In the case of the MG affected individual, the  auto-immune system becomes too aggressive and releases antibodies which interfere with or attack and destroy or block (I don't know which, the literature is inconsistent) some of the receptors. The less receptors available, the weaker the muscle capability. All this suggests several approaches for treatment: protect the receptors, inhibit the enzymes that digest the Acetycholine, and/or decrease the excessive antibodies.   The end result is the muscles don't contract when commanded by the nerves. To the patient the muscles act as if they are too weak to obey commands. Voluntary or skeletal muscles are those involved in MG. They control eyelid, tongue, mandible, breathing (Diaphragm), swallowing, smiling,  and other functions.   For more detail, go to  these links: Myasthenia Gravis Foundation of America,  Myasthenia Gravis Links,  or Terry's Ocular Myasthenia site. I have found Terry's site the most helpful. 

My Symptoms:

As previously stated, my purpose in describing my MG history is to help others with similar symptoms find a pointer to a correct diagnosis.  Prior to my MG diagnosis, I did a lot of web searching using "at the time" current symptoms as keywords in a variety of Boolean expressions using many search engines. I never stumbled over MG despite its significant presence on the web and no doctor I consulted mentioned the possibility. This webpage only superficially describes details of the MG mechanism (above) and some available treatments. It does not suggest  treatment (perish the thought). If after reading these symptoms you think you might have MG, seek out a neurologist. There are definitive tests to confirm or eliminate MG. What you should learn here is some of the MG symptoms to consider this disease as a possibility (if the symptoms fit) and assure those early in treatment, there is light at the end of the tunnel.

Symptoms vary from patient to patient and time to time. I did not experienced all the symptoms described below at the same time. Some were replaced by others as months passed. I don't know if that is due to the nature of disease (but it is a common experience) or due to the medications I tried to squash the symptoms. 

My initial symptoms first became obvious sometime in 1996.  I was having dinner with a friend and my speech became slurred. He thought I  had too much to drink. I denied it. In thinking back, there was a similar experience months earlier at a family dinner where there was no alcohol available.  On that occasion, I thought the food might have been too seasoned (hot peppers, a family passion).  These symptoms intensified over the next year or so. The tongue felt swollen but didn't look swollen to my cadre of doctors.  Incidentally, I have a benign condition called Geographic tongue which confused things.  

Two theories were proposed, each with some validity. At the time and for many years before, I took Capoten for control of hypertension. About 6 months or so before the first incident described above, the dosage was quadrupled. During early treatment but prior to the MG diagnosis, it was correctly suggested that Capoten played a part in all this. I don't think it precipitated the disease but I am certain it aggravated it. The second theory was that acid reflux (I have a humdinger of a hiatal hernia,) was aggravating the tongue. At about the 1 1/2 year point following initial symptoms, I couldn't say more than a couple of sentences before the tongue "fatigued" and I couldn't be understood verbally. I experienced a one + year period with very limited verbal capability.  While mechanically my speech is repaired, I am no where nearly as verbose as I used to me. Sometimes, I think I forget I can talk.  The acid refluxing greatly interfered with my sleep so I was in a constant state of exhaustion. MG symptoms become worse with exhaustion and fade with a very short rest period. Fatigue is a classical symptom of MG. 

Replacing Capoten with Norvasc and using Propulsid (to control the reflux) definitely helped but did not eliminate the symptoms.  Propulsid  restores function to a "valve" that, in normal condition, prevents refluxing. Want to bet that valve is a "voluntary" muscle (lax sphincter muscle between the stomach and esophagus)? My medical experts think not; I think so. Use of Propulsid has subsequently been severely restricted. It is a high cardiac risk medication for adults and children, especially when mixed with some medications including diuretics. Rats! If I've ever had a magic bullet, it was Propulsid. I've switched to Reglan. There is also a bit of irony with the helpful switch to Norvasc. Norvasc is a calcium channel blocker which is a family of hypertension medicine known to aggravate MG symptoms. I've since switched to Diovan, an ACE inhibitor. Capoten is also an ACE inhibitor.  Weird! In any event, switching from a calcium channel blocker appears to helped further. 

During the same period that my verbal communication was affected, I lost the ability to eat many food types. Food would get plastered to the roof of my mouth and couldn't be dislodged without an external prying device. Even if it wasn't plastered to the roof of my mouth, I often couldn't  maneuver the food into a grinding position. Eating was a horror. Some of these eating problems were due to the loss of tongue dexterity but I also was generating tremendous amounts of phlegm or mucus.  I started waking up at night with the feeling I was drowning. I would forcibly expectorate great globs of the stuff to "breath" and would be afraid to go back to sleep.  The lack of sleep and fatigue got worse. I would slobber when I ate. Because so many things were going wrong, it took a while for me to figure out that there was an excess of phlegm being generated.  This problem was rapidly brought under control by a very competent allergist with  Histamine II blockers, wonderful stuff. Apparently there are lots of people with this problem. I don't know if this phlegm business has anything to do with either MG or the reflux. I have seen it mentioned occasionally on MG boards. By the way, I am very heavy and did not loose weight even during the period of eating difficulties

Some other symptoms: I suffered  "painful" cramps in my fingers while typing (my fingers actually refused to obey commands) and cramps while stretching my feet. I incorrectly thought the former was carpal tunnel syndrome but, in my case it  is definitely MG despite what my neurologist thinks.  The feet symptoms, I'm not sure but think it MG.  Almost all finger and foot cramping is gone but still occasionally occurs.  It is also interesting to note that I was not able to whistle for years (facial muscles) before the major symptoms surfaced. I can now.  A classic symptom, which I experienced but failed to detect, which lead to the initial MG diagnosis is drooping eyelids. I thought my eyesight was failing because my eyelids were partially closed most of the time. I saw the world through my eyelashes. People would go to trouble to look me in the eye. It looked like I was avoiding eye contact. Another classical symptom is difficulty in swallowing. I had so many other difficulties eating for the reasons described above, I didn't know that I also experienced this symptom.  I recently learned (4 years after the event) that a gastrologist who screened my esophagus for cancer suggested to my primary care taker that I be tested for MG and ALS. He detected some swallowing difficulties. GRRR!

During the last year preceding diagnosis, I became increasingly unsure of my driving ability but didn't know why. During that year, my neck muscles dramatically weakened, another common MG symptom. I would go around telling people how tired I was and my doctors how heavy my head seemed.  I often couldn't support my head without a headrest. About 6 months prior to diagnosis, I suffered several asthma attacks under hot physical stress conditions. I still don't have know if there is a connection to that and MG but the timing of its arrival is suspicious. My medical help think not. I noted some asthma links on Terry's site referenced above and asked him why the were there. He thinks, independently, there is a correlation.  There is a link between refluxing and asthma but my refluxing should have been under control at that point. I can say that I have not had an attack since the MG was placed under control. (9/01 added note. I have been force walking outside in hot humid weather for exercise and still no asthma attack) About 4 months preceding the MG diagnosis, while running an errand, I tripped in a pothole on a Washington DC street. I banged up my face and made a mess out of my legs (major swelling for 4+ months, especially my right leg). At this point, I became afraid to travel by foot, particularly in the area around L'Enfant Plaza as it is an obstacle course. The swelling didn't help either.  

Then things got really bad. I tried stepping up into a shuttle van, since I was afraid to walk a few blocks, and my thigh muscles collapsed stranding me half in and out of the van.  A few days later, I lost the ability to cut food with my molars. I could only chew a few times and then I couldn't close my jaws enough to chew.  Finally, about 1-2 weeks later in this condition, while driving on a major interstate highway, I suddenly developed spectacular double vision. Fortunately, for work and sanity purposes, I could still focus both eyes at reading and computer monitor distances.  This was the bottom. I  went to my internist who sent me to an ophthalmologist who sent me to an optho-neurologist. He (Shalom Kelman, Baltimore) diagnosed me as I walked into his examining room (drooping eyelids). In hindsight, I suspect the driving issues and fall was a result of partial undetected double vision. During the "getting fixed process" which, in part, was like backing up through my symptoms, I would experience double vision when shifting my focus point and "watch" objects converge. In other words, stationary objects had motion.

Continued 

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