DorkyDeb.com

Yesterday I posted Part One of my long road to diagnosis, for MG Awareness Month.
The following is Part Two:

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I worked in an environmental science position where I was exposed to a lot of toxic chemicals (heavy metals, PCBs, you name it, I was around it).  If you want to know a little about exposure to those things, I’ve linked the names to some information on how they can impact the body. Particularly the immune system and the thymus (the thymus is involved in MG).

I loved my job, but many of my doctors now think my exposure there, may be why my immune system went nuts.  I developed a severe allergy to latex (wearing latex gloves 12+ hours a day can do that to a person) and I developed Hashimoto’s Thyroiditis (an autoimmune disorder where your body attacks your own thyroid. It is a very common condition for people with MG to have, prior to MG diagnosis).  (red flag). It was confirmed via physical exam, bloodwork that showed I was making antibodies to my own thyroid, and a nuclear med scan that showed my thyroid was inflamed and under attack.

During the “attack phase” of Hashimoto’s, I went through a spell where I could not swallow solid food for months and I had to write everything down on a notepad because I couldn’t speak more than a word or two at a time. (huge red flags) They had no explanation for this because they didn’t think that my thyroid, while inflamed, was large enough to be interfering with swallowing or speech.  But their only guess was that my thyroid must somehow still be the cause and they put me on prednisone and high doses of Advil. It was so difficult to choke down those pills and prednisone made me horribly ill.  Eventually my swallowing and speech improved.

After Hashimoto’s Thyroidits, I began having serious issues with allergies and asthma that got progressively worse. (Which is also a malfunctioning of the immune system.)

In this time after the car accident, I had all sorts of little symptoms of MG.  Every time these symptoms cropped up, my doctors - knowing I had a MPS and fibromyalgia diagnosis - blamed it on FM.  Everything that should have led to a MG evaluation was discarded as “just another symptom of FM”.

Stress (I believe) caused my life-long IBS (or “the family stomach” as my family called it) to go from manageable to out-of-control.  I lost an extreme amount of weight in a very short period of time. I had put on weight after the car accident and I was carrying too much. But I lost 90 lbs in 4 months, which left me far too thin. The rapid weight loss caused my gallbladder to become diseased (a frequent side-effect of loosing too much weight too fast), and I had to have it removed.

During this outpatient laparoscopic gallbladder surgery (in my early 20′s), they accidentally cut my throat, airway, and sliced open my uvula while intubating me. (Picture one long, deep cut running from the roof of your mouth all the way down.) I spent the entire day following my operation, in the ER with breathing problems due to the damage and subsequent swelling in my airway. My surgeon (a very nice guy) was so outraged when he found out that they let me leave the one-day surgery center and go home in that condition, that he got one person fired, one transferred to a non-patient care area, and two officially reprimanded.

I had always sang in church and some in chorus in school.  After that surgery, I had major throat issues.   Suddenly, I couldn’t sing anymore. If I sung for an extended period of time, I lost my voice.  (big red flag)  I have kept this new symptom ever since. My days of singing in church were done. When I mentioned this to doctors, they would shrug and say, “I don’t know” and move on to talk about something else. Personally, I suspect they didn’t want to look into it, because of fear of malpractice issues over the intubation.  But I wasn’t looking to sue anyone, I just wanted to know why I couldn’t sing anymore.

One night at home, quite some time later, after eating very hot soup, my throat closed (not in an allergic reaction type way I’d experienced before) but I just felt like my airway fell shut. (huge red flag) Everything went black, I fell backwards and nearly passed out before I was able to get a breath again. Even once I got air again, I struggled to breathe for awhile.  Interestingly enough, I remember having trouble with my eye lids during this episode.  (red flag)  My family called an ambulance.  By the time the ambulance arrived (45 minutes later), I was ok.  A little rattled, but my breathing had mostly calmed down.

The paramedic that checked me out was condescending, dismissive, and started asking my family if I had a history of panic attacks (to which they told him no) and I told him I wasn’t upset or stressed at all when this happened to me. I told him I was having a nice relaxing evening at home and had just finished a bowl of soup. He told me that panic attacks can happen totally out of the blue for no reason and he said, “Clearly you’ve had a panic attack” and he disregarded my symptoms.  My mother asked him if I needed to go on to the hospital to be seen and he brushed her off too, telling her, “No, there is no reason.”

I later brought up the airway closing episodes with my ear, nose and throat specialist (who was handling my allergy issues at the time), but that went no where. He thought it was some sort of random muscle spasm.  I now think this episode was actually an MG episode, especially because I can’t tolerate eating hot foods at all now, or my airway collapses.

I also remember another problem that I now know was MG-related. I had episodes with weakness when in extreme heat. Now that my MG has progressed, it doesn’t take extreme heat to give me problems, even mild heat sparks my symptoms. But in the past, I had some episodes when using the hot tub at my local gym, that I thought were very odd.  I had been using the gym’s equipment and pool for rehabilitation after breaking my leg (yes, I’m accident prone, I know).  The gym had almost everything that PT had, and for a lot less cost to me.  So I asked my physical therapist what they thought about me leaving PT and finishing the rest on my own at the gym. They were fine with that, because I knew what I was doing (the whole been-there-done-that thing), and they just encouraged me to come back if I needed them.

I had started using the hot tub after doing my exercises, to relax some of the MPS trigger points that occur with activity.  (Heat helps MPS. It aggravates MG.)  So being in the hot tub made my trigger points improve somewhat, but if I stayed too long…. I could barely walk out of the hot tub and to the ladies locker room.  My legs felt like jello. A few times I had to sit on the bench just outside of the hot tub just to cool off enough to be able to walk to the locker room.  The locker room was almost always way too cold, and there, I would usually improve quickly. (all huge red flags for MG)  I discussed this with a friend I made at the gym (a big guy who caught me once when I almost fell leaving the hot tub – LOL) and he said that I needed to hydrate more, and to bring a bottle of water with me to the hot tub.  That actually did help – just a little.  But the problem remained.  And it was very tricky to figure out when to leave the hot water, because the weakness could come on so suddenly. Eventually it got bad enough that I stopped using the hot tub all together, because the weakness from it was affecting my ability to drive myself home afterwards.

I remember when, out-of-the-blue, my symptoms started spreading to my legs during normal everyday activities. I would make the long walk to our mail box (I live in the country, so my mail box is not near my house), and I would pick up my mail, my grandparent’s mail, my parents mail, my cousin’s mail, and I’d walk it to their houses.  Suddenly that became difficult. There were times when my legs hurt on the walk back, or felt like they were going to buckle under me. (red flag) I brought this up with doctors and was told, “You can have fibromyalgia symptoms in your legs. It’s probably the FM.”

I ended up having so much intermittent trouble with my vision that I went to my eye doctor. She told me that during these episodes my eye muscles weren’t working together and were giving my brain two different pictures, to try to process into one.  She asked me if I’d been diagnosed with a muscle disease.  I said, “Well, I’ve been told that I have fibromyalgia.”  She said, “Yes, that must be it.”  And she sent me home telling me that she was sorry there wasn’t more she could do for me.  (HUGE red flag – this is one of many points where I should have been sent for an MG evaluation. It is often an eye doctor that first suspects MG. Unfortunately mine did not.).

I thought about trying to find another eye doctor for a second opinion, but I didn’t have vision coverage at the time, and I’d already spent a pretty large chunk of change on the appointment where I was told there was nothing they could do.  I did mention the vision symptoms to my other doctors, who brushed it off as possibly a side effect of my antihistamines.  (The same antihistamines I had taken for years, without vision issues.)

I continued to have those milder MG symptoms for years. If I talked excessively, I would loose my voice, and/or have trouble swallowing.  (more big red flags) Again doctors blamed my swallowing difficulties on FM or possible damage from the intubation issue.

I once took Zithromax (Z-pak) for a sinus infection and felt so bad, I didn’t want to take it again. My doctor later insisted I try it again and that time the feeling and weakness were much worse. I told the doctor and they just said, “Hmm, well we’ll make a note not to prescribe that to you again.”  (Another HUGE red flag ignored.)

Later I began noticing that while taking any antibiotic, I was weaker. (another red flag) More recently, as my MG has progressed, this has happened to me even on Amoxicillian (one of the “safer” antibiotics for MG). Which is why I try so hard to avoid germs, whenever possible.

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Thank you for reading. I will post Part Three of my story tomorrow.
(Click here to read Part Three.)