Myasthenia Gravis - The Resource

My Story

UPDATES 2003

Where my story starts is debatable. Does one start with the day of "the news" or ??

For starters, I'm a white female, age 38, no kids and basically no family. My family consists of an extended one rather than genetic. I live outside of Birmingham, Alabama.

For about 10 years, I've known something was wrong but didn't have a clue as to what it was. I've been to doctor after doctor, had MRI and CT scan one after the other, gallons of blood tests and even psychiatric tests. Nothing was ever wrong with me according to the doctors or it was blamed on my weight.

It was during this time that I finally convinced one doctor to do a TSH test to determine if my thyroid was functioning properly. Previously, the standard test for hypothyroidism came back fine. Sure enough, I needed thyroid medication. One hurdle jumped.

I'm not classic "textbook" anything. When it comes to medical issues, I never fit the traditional profile with symptoms or medication. If I had something wrong, I could expect the symptom to either not be listed or be in the lowest percentage group. This certainly didn't help when it came to determining why I was suffering from various problems.

My consistent symptoms were twitching of the eyes and face (looking back - not a primary complaint at the time) , weakness, extreme fatigue, lack of concentration, lack of short term memory, insomnia, dizziness, periods of falling, stumbling, banging into things, shaking, twitching of the extremities to the point of seizures and a "pins and needles" feeling in my hands and feet.

I was diagnosed with myoclonus, eventually. Closely associated with/mistaken for RLS, or "Restless Leg Syndrome", my legs would jump and twitch during the day but primarily when trying to rest. Part of the diagnostics was a sleep study, which determined I had sleep apnea. My weight had always been high and this is a primary cause of sleep apnea. Two years ago I tried a CPAP machine that helped but loosing the weight due to RNY surgery (gastric bypass) was the key that solved the apnea.

In 2001, I had gallbladder surgery (another diagnostic nightmare) and in 2002 I had the gastric bypass. I was at my highest weight of 300 pounds and as of today, weigh 166.

Summer, 2003

Working as a manager in a trucking company was a stressful job. An always changing environment, personnel issues and reorganization kept me on my feet and working about 12 hours a day. I was tired. Very, very tired. As a Dell certified computer technician and a background in computers, I also fixed/built/upgraded computers in my spare time.

I found a primary care doctor that I hoped would treat me with dignity and respect and not blame my weight or other issues. Thank goodness, I found her. She put me on medical leave and started tests. Trying to rule out immediate life threatening illnesses, I had heart tests, blood tests, all kinds of tests. One of the suspicions was MS (multiple sclerosis) and it still may be in my future diagnosis but an MRI ruled out lesions, so we went forward.

During one visit, she asked me about droopy eyelids. Here again, being atypical, droopy eyelids wasn't a noticeable symptom unless I was REALLY tired...and then, it wasn't like the pictures you see of MG patients. I had other tests that determined my thyroid was low, needed B12 (a throw off from gastric bypass surgery) and needed rest. She referred me to a neurologist.

My previous experience with neurologists hadn't been pleasant. When I first started this journey ten years ago, I had tests for the seizure type activity I suffered. It was "all in my head" and I was "depressed". I was not looking forward to this visit.

I met with the neurologist and was pleasantly surprised when he actually listened to me. Within 10 minutes, he wrote the words MYASTHENIA GRAVIS on a notepad and told me he was ordering a blood test along with a jolly test, nerve conduction studies and the like. The next week, he called me to say that the blood test was positive for the antibodies in an MG patient, called in some Mestinon and scheduled a follow up visit.  Now, I knew. I had myasthenia gravis. That was five weeks ago.

Within two weeks, I started going downhill faster. I was more tired, more weak. The week prior to the diagnosis, I had a spell where I was too weak to move, couldn't breathe well, was drooling, twitching and feeling very odd. I went to the local ER and was told I was DEPRESSED; go home. I went home, rested and was able to pull out of it for two weeks.

Shortly after the diagnosis, my "spell" became worse and having done research, I realized I was having a myasthenia gravis crisis. I went to the ER at the hospital my neurologist had privileges and my roommate was able to tell them I had MG and was in crisis. Within an hour, my respirations were at 4 a minute, my BP was 50 over something unreadable and I was in bad shape. The ER doc had called the neurologist and during this same hour, I had a team of physicians surrounding me.

They had no choice but to put me on life support, start plasmapheresis, give more Mestinon, put me on Prednisone and Imuran, prescribe inhalers and hope for the best. I was told I may not make it.

I was in MICU for a few days, then in a room. I came out of it by the hardest. The next week, my sick time ran out along with my job (I still couldn't work) and there went the insurance. No money, no nothing. After talking to others online, I called the Muscular Dystrophy clinic and scheduled an appointment. I went to my last visit to my primary, filled her in on details and had her give me as many samples of meds I was on, as possible.

The house is in foreclosure in a few days, utility bills overdue, phone to be turned off at any point, don't qualify for food stamps until October, can't see a neurologist until the middle of October (through the MDA clinic), disability will take quite some time and there's no money coming in. Still waiting on original neurologist to fill out paperwork for my ex job's long term disability.

I've called a few animal shelters to hopefully place my beloved cats...my children...the lights of my life. I've called the two women's shelters but they are full. Called a friend to ask to store my computer and a couple of boxes. Sorting through some stuff to decide what to pack in the car.

SEPTEMBER 3, 2003

Here's the plan...the power will stay on until the 15th of this month, at which time I'll owe $157.00 to keep it; the gas is $231.00 that was due 7/31 so it'll be shut off any day, now. If I can find a way to keep the water on (owe about $110, it is a 3 month bill) and the phone (not necessity so may loose it though it is a lifeline when you're stuck at home - just hope I don't need 911), then they'll foreclose on the house but I'll have about 60 days to figure out what I can do. That is, of course, if I can keep power and water and find a way to get groceries.

(I'm hoping I can get some computers in here to fix, which will give me grocery money. However, I can't do that without a phone line, either due to A) phone is listed in phone book as a computer shop and B) I won't have internet access to download drivers, etc. that I need for repairs.)

The Red Cross will usually attempt to pay one bill a year but I was told that they aren't doing that at this time due to lack of funding. My water company will only make arrangements once a year and unfortunately, I've done that already in January.

The doctor marked my long term disability papers as "able to work administrative/clerical" with "no fatigable exhaustion" YEAH, RIGHT so that means I won't be getting it. As a manager, my job was considered administrative so according to this man that saw me for 10 minutes and diagnosed me (his partner was my doc in hospital during crisis), I can go back to doing the same stressful job...*sigh*.  He mentioned the hospital stay but no mention of any other medication other than Mestinon and no mention of being on life support and ICU.

I still have trouble going from one room to the next, along with having several symptoms that were present before the diagnosis and are still rearing their ugly head (speech issues not resolved by new drugs, pain in thighs, cramping in feet/hands, twitching in upper arm muscles among a few).

He did, however, mark my handicapped sticker application for LONG TERM DISABLED. Go figure.

I did get a call from his nurse (after trying to reach them for 3 days) and after explaining some issues, he upped my Mestinon to one every 3 hours and made an appt. for me to see him in the morning at 8:30. I'll certainly inquire as to how I am to do my job. Although I have no insurance, I feel it necessary to go so I'll just say "bill me" on my way out the door.

SEPTEMBER 4, 2003 - DOCTOR'S VISIT

Saw doc this morning. He says I cannot work; the choices that were given on the paper were levels 1-5, with 1 being able to do anything/everything (best) to 5 being bed/home confined (worse). He marked me a 4 because I am not homebound but #4 also says "can do sedentary work". He whipped out some letterhead and hand wrote a letter to the long term disability people stating that I could not perform my work duties. OK, that takes care of that.

He says I need IVIG immediately. When I explained the insurance situation, he just shook his head and told me to sell what I had to sell, beg, borrow or steal but that I HAD to try and continue COBRA insurance so that I could have this treatment. He says I am a chronic, unstable patient on the brink of crisis. He upped my Mestinon to 720mg a day, lowered the Prednisone to 40mg a day and upped some ReQuip. He also gave me some pain meds due to legs...

When I asked him about other symptoms I was having, he told me that his number one concern was the MG as it was too unpredictable for me at this point and everything else was secondary.  I really didn't realize how "bad" I was until I went to the doctor today. My roommate went with me and I think it confirmed what she already feared. She knew I was worse than what I was willing to accept.

SEPTEMBER 7, 2003

This has been a stressful weekend. Thought I would have to go to ER last night but thankfully, it was just an extreme weak spell that I was able to get through. My eyelids wouldn't open, I had no strength, couldn't hold my head up and barely made it to the couch and collapsed.

Sold the car for the phone bill. Got $300 for it although it was worth at least $750. It covered the phone bill and NSF charges where the bank had covered the check. SO, I at least have the phone for a month. (Remember, I thought I had the money originally AND I needed the phone as a lifeline to the outside as I am relatively house-bound.) The guy bought the car on Friday and then died yesterday before the title was signed by him and transferred. We managed to get the car back to the house until his family contacts us. So, I have a car again that I can't use because it's been sold, though still in my name.

Now to worry about the rest of the utilities and groceries. The mortgage company has quit ringing the phone off the hook so I expect the foreclosure letter any day, now. Still eating popcorn for supper and whatever else I can find. Roommate got a job cooking at a Waffle House for $7.25/hr and it allows her 2 meals a day. So, I don't have to worry much about her getting food, just me. She tries to sneak me what she can but there is a fine line between stealing food to bring home and sneaking me part of her meals.

Many have asked me about Social Services. This is Alabama. I don't qualify for food stamps until October, since I received a partial sick pay check from my company on Aug. 10. Medicaid does not have a program that I qualify under as they are reserved for the verified disabled (SSI) and women/low income families WITH CHILDREN. There is a free medical clinic based on income but they do not specialize and have referred me to the MDA clinic for treatment, meds, etc. There are a few food banks run by the United Way and some churches and I have received, to date, 12 cans of food based on being a single family unit. I'm not complaining here, just stating facts.

SEPTEMBER 12, 2003

Breathing hurts. My chest muscles are sore and weak; I've noticed my posture getting worse; I'm slumping forward. My legs stay in pain. Darvocet does nothing. I'm averaging about 2-4 hours of sleep in a 24 hour period. Being awake means having to take Mestinon every 3 hrs and I'm running out. I suppose the good part of it is that running out means a trip to the ER, in which case they'll do the IVIg the doc so wants me to have.

Some really good news is that my mother paid my 1st month COBRA payment, so I have insurance until the 26th of this month. The home health folks called and are setting up the IVIg for probably the end of next week. Insurance is 80/20 and I have some out of pocket costs but they said they'll bill me after they collect from insurance. Don't know how in the heck I'm gonna pay for it but I won't worry about that, today.

The not so good news is that I only have enough Mestinon through Sunday. I have a script of course and a co pay of $20 I think but I don't have ANY money. There hasn't been a loaf of bread in this house in over 3 weeks, now. I sure don't have the money for the meds. The other medication will run out next Friday. Power is due to be cut off Monday. Water cut off date is next Friday. Gas cut off date is the week after that.

Worse news: my roommate apparently had another stroke, Wednesday. Of course they can't do anything with her after the fact; didn't paralyze her but she called off work Wednesday due to a headache so bad she couldn't stand it, was off Thursday and today and she's not much better. Just wants to sleep all the time and is just drained, doesn't feel "right", etc. She can't stay up past a couple of hours, not sure how she's going to work tomorrow but if she doesn't, I'm afraid they'll fire her since she just started last Saturday.

When it rains, it pours......(and then the roof leaks.)

to be continued.........

I'm planning on doing a section dedicated to the stories of others. If you'd like to share your story on this site, please email me.

 

Hesitantly, I am putting these buttons on the site by request. Many people have asked how they can donate to various charities such as the MGFA, MD and others. You can go to their sites or you can donate from here.

The distribution will be as follows (you have my word of honor) unless you specify otherwise:  15% for the upkeep of this website- I hope to get a domain name for it soon; 50% to the Myasthenia Gravis Foundation; 35% to the Muscular Dystrophy Association for research and for allowing MG'ers to go to their clinics.

*Just as a note, no one has donated to me via this site on a personal basis. If that should occur, I will use this space to account for any monies received.*

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Map of 5301 Wilkes Blvd
Midfield, AL 35228-3225