Saturday, May 30, 2009

Allergies and Myasthenia Gravis -- is there a connection?? I have had allergies ALL of my life. When you have allergies, your body gets "confused". It thinks that harmless things like pollen, dander, dust, foods, etc. are the ENEMY and must be ATTACKED!!!! Myasthenia Gravis is an Autoimmune disorder. In autoimmunes, your body gets "confused" and thinks that some of its OWN cells are the ENEMY and must be ATTACKED!!!! In MG, the neuromuscular junction is attacked. Antibodies are made that destroy some kind of receptors (hey, I'm not a doc and I'm not even going to TRY to get technical here). But, these antibodies can be detected in some tests -- AChR and MuSK bloodtests. There may even be OTHER antibodies that they have not developed tests for, yet.

My allergies are STILL acting up. We have had a LOT of rain this Spring -- and stuff is blooming everywhere. My regular antihistamines have stopped working. The allergy shots that I took for about 15 years seem to no longer be helping. So, I'm trying a new antihistamine. It seems to be slowing my brain a little -- so, if you see typos.......GET OVER IT (LOL).......but, I didn't "suck" the roof of my mouth as much last night. If you have allergies, you understand this itchy mouth thing -- which can drive you PAST insanity!!!

Thursday, May 28, 2009

This morning I got my Google alerts. I read about a woman in Texas who is suing the police and just about everyone else in the city. Here is the scoop. She has MS and was driving erratically. She was stopped by the police and told them she had MS -- they knew NOTHING about it -- and arrested her. She was charged with DUI. There's a whole lot more to the story -- probably even more than what I read -- but, here's what scared ME. I have Myasthenia Gravis. I OFTEN appear to be drunk -- I sometimes walk AND talk like I a drunk. I even carry a laminated card in my billfold AND in my car that says "I am NOT intoxicated, I have Myasthenia Gravis" -- and it goes on to describe the symptoms. It even has the names and telephone numbers of my two neurologists, my general practitioner, and my pulmonologist -- the four doctors who DO know about my MG. BTW, I do NOT drink alcohol -- AT ALL -- never have!!!

I read about a lady who lived in an apartment somewhere in New York. She was being harassed by her neighbors. She complained to the police. When the police came to investigate, the lady sounded drunk -- yes, she has MG -- so, the police took HER into custody and she collapsed. They called some paramedics -- she told them she had MG -- they had never HEARD of it -- the police thought she was lying. It was a NIGHTMARE. She is now TERRIFIED of the police AND the paramedics. What a way to live!!!

Wednesday, May 27, 2009

One of my bestest online buddies needs to have a "new" treatment -- either IVIG or PEX. IVIG is Intravenous Immunoglobulin. PEX is Plasmapheresis. We use abbreviations a LOT in the MG world -- LOL. I'm not going to go into explanations about what these are -- you can look them up -- there are PAGES and PAGES of info -- arrrrrgghhh. My friend has lots of problems besides MG -- bless her heart. She was diagnosed with PH (pulmonary hypertension) -- a very bad illness. She also has heart problems and is now having kidney problems. All of these problems in one of the sweetest, kindest, most compassionate Christian women that you could ever meet -- and she is only in her 40's. She has such faith -- and although we may never meet on earth, I know that we will see each other in Heaven!!

So, at first her neuro wants to do IVIG -- but, her nephrologist is NOT sure that her kidneys can handle it -- IVIG is very hard on the kidneys. I am not a big fan of IVIG, anyway. I had two days -- my first day was a BREEZE -- about 3 hours after my 2nd treatment, I got the WORST headache in my LIFE (and I suffer from migraines so I KNOW what a bad headache feels like). My migraine meds and even pain pills wouldn't touch this headache -- so, the next morning, I ended up in the ER -- CT scan, Demerol, Phenergan, Morphine (which made me sick as a DOG) -- and I was sent home. The IVIG sent me into an exacerbation that lasted for 3 months -- my neuro said "no more".

So, now my friend's neuro is looking at PEX. I am nervous for her. I have read that PEX is not good for people with heart and kidney problems. And, you guessed it, I had SOOOO much fun with MY one and only PEX treatment. I had a central line surgically implanted in my neck on one day (what fun -- NOT!!!) and went for PEX the next. The nurse tech did NOT think I even looked like I had MG -- this is a common reaction -- but, he was in for a surprise. The hospital where I went for PEX does this 6 days a week -- they have hundreds of patients a year -- they KNOW what they are doing -- they have seen it ALL -- but, they had NEVER seen a reaction like mine. As soon as I was hooked up, the machine was turned on -- slowly -- and my legs began to quiver and shake -- like I had a high fever or was in a tub of ice water. Two other nurse techs and a doctor all came to see what was going on -- they could NOT figure it out. I was given Benadryl and a Calcium Bolus -- they put my head lower than my feet -- nothing seemed to help. The machine was slowed down even more -- this helped a little. I was asked if I wanted to stop. NOPE -- I'm a "big girl" -- I am going to DO this!!! A man with CANCER came in and had PEX in the next bed -- with NO problems. He finished in a couple of hours -- I was there ALL day long!!! When my treatment was finished, I was given extra IV fluids. Then, I was slowly raised to a sitting position -- sat there for a while. Then I slowly put my legs over the edge of the bed -- sat there for a while. Then, with my sister under one arm and the nurse tech under the other, I stood up SLOWLY. OHHHHHHHHHHHHHH -- I said, "I think I'm going to pass out." And I did. My bp went to 44/16 -- the automatic cuff was still attached to my arm. Actually, I "died" -- I even saw heaven. But, that is another story. I came "back" with my feet on the nurse's shoulders and my sister calling my name. Except for MG, asthma, allergies, and migraines, I am pretty healthy -- but, PEX did a number on me. So, I am VERY worried about my precious friend.

Tuesday, May 26, 2009

We need a Michael J. Fox. There, I said it. I am sort of ashamed of even thinking or seeming to "hope" that someone famous gets this horrific disorder called Myasthenia Gravis -- but, then I look at what Michael J. Fox has done for Parkinson's. Is MG as "bad" as Parkinson's?? It can be -- sometimes it is worse. We have several members who are on a first name basis with their wheelchairs/powerscooters. There are MGers who are hooked to ventilators. One of my dear friends lost the use of her voice (not in the normal MG way) -- but, because she was on a ventilator for so long due to respiratory crisis. She almost died several times -- and now, she has a battery-operated talking "thingy" that she holds to her throat.

MG is rare -- there are different statistics -- I could quote them for you -- but, what is the point? Most doctors (general practitioners) may only encounter one or two MGers during their lifetime of practice. Even general neuros do not see it regularly. Since we are rare, it is not "cost effective" for pharmaceutical companies to develop drugs specifically for us. *sigh* There was one that we were all keeping an eye on -- Monarsen. It was being developed in Israel -- and it looked like it would do an even better job than our Mestinon. But, it was bought by another pharmaceutical company -- and apparently, they decided that there weren't enough MGers to make further development of the drug worthwhile. BIG *sigh*

Do ya know anybody famous with a droopy eyelid or double vision??

Monday, May 25, 2009

The MGCTHT group topic "de jour" today seems to be -- "How does Myasthenia Gravis affect your relationships?" Man, this is a DEEP one!!! For those of us who are married -- relationships are either strengthened OR strained. For those of us who are single -- TRUE friends are discovered. Chronic illness is tough -- PERIOD. Cancer, paralysis, stroke, dementia, ALS (Lou Gehrig's) -- those are a few that come to mind where spouses, family members, friends DO often, but NOT always, seem to rally around the patient. MG is somehow different. Family, friends, even those medical professionals who are NOT familiar with our symptoms, doubt the sudden onset and severity -- UNTIL they witness it first-hand. Trust me, it ONLY takes once to make most of them believers. The MAIN problem is that SOMETIMES, we "appear" to be "normal". So, people "assume" that we must be faking/exaggerating our condition.

I cannot speak for everyone -- but I DO know several MGers face-to-face -- and THEY are like me -- we do NOT "crave" attention. In fact, I INTENSELY want to "fade" into the background. I want to view life from the "sidelines", if you will. MG irritates the "snot" out of me in this regard. I do NOT want to be noticed -- NOW, everyone is constantly asking about me -- "How is Jana, today?" "We haven't seen her in awhile, is Jana ok?" "We saw Jana walking and she was dragging her leg, is she ok?" -- and on, and on, and on. Let's not even TALK about the looks on faces when people hear my voice -- my slurry, drunk sounding voice!!! OH, just let me be invisible!!! (Yes, I know that these friends and family members are VERY loving and kind -- and I DO appreciate their prayers and concern -- I have just always been a very private, independent person -- and MG is "getting in my way"!!!)

Ok, enough of my rant. The point is -- because we wax and wane -- our symptoms "come and go" -- SOME people think that we AREN'T as seriously ill as we ARE. Case in point: A wife with MG who has worked all day comes home and collapses on the couch. She cannot do anything else. Her husband thinks that BECAUSE she was able to do her PAYING job, she should be able to do her household work, too. MG doesn't work that way. We have a certain amount of energy for the day -- when we use it up -- it is gone -- until we get rest -- it "ain't" coming back. Even WHEN we rest, it may not ALL come back. But, PUSHING does NOT work with MG -- it only makes us worse -- in fact, pushing when we are tired can land us IN the hospital -- in something called respiratory crisis -- which means we are on a ventilator. EEEEKKKKKK!! Something we do NOT want!!!

*SIGH* I've written a "book". I'll save the rest for another day.

Saturday, May 23, 2009

A continuation of my journey with Myasthenia Gravis: Because I do NOT have a droopy eyelid, some docs are suspicious of my MG diagnosis. After about a year of care, my case became too complicated for my general neuro -- he sent me to a teaching hospital several hours away. I was assigned to a third year resident -- and at each visit, I saw him AND whatever teaching neurologist he was assigned to during that particular rotation. Well, the FIRST thing that THEY did was MORE bloodwork. They did NOT believe my original AChR test results. OK -- I am not afraid of needles -- I used to give donate blood regularly -- and I gave myself allergy shots in my thighs for years. Guess what?? The blood tests were POSITIVE again!!! Frustration. They wanted me to take steroids. I can't -- I have steroid psychosis -- I become suicidal. They wanted me to take Cellcept -- no way -- I have family members with skin cancer and lymphoma. I got tired of arguing and driving so far.
Someone contacted my sister about an MG/MDA specialist who is only about an hour and a half from me. It took a year to get an appointment -- and after taking one look at me, he wanted MORE bloodwork -- LOL. Ok -- again, POSITIVE. But, this is MY FAVORITE doc. He understands me -- and works with me -- and knows SOOOO much about MG -- and he has a sense of HUMOR -- he is a keeper. I still see my general neuro, too -- I like having a "team".

Friday, May 22, 2009

Just a short post today -- my nieces are visiting -- both are still teenagers -- and they LOVE the computer, so.........
I was thinking about how hard it is to get diagnosed with Myasthenia Gravis. For about two years, I couldn't whistle. It drove me crazy -- couldn't call the dogs or horses -- couldn't "talk" like the birds -- couldn't mimic my favorite tune. My dentist and doc thought that I might have TMJ -- my x-rays showed deterioration of my jaw "joints". It finally got so irritating that my dentist sent me to an oral surgeon who felt of my cheeks and said that the muscle fibers had shortened -- he suspected Scleroderma. I KNEW what that was and I FREAKED. I was given an appointment with a general neuro in couple of months -- in the meantime, I did my own research. When I finally saw the neuro, I told him I "thought" that I might have MG -- he looked sceptical -- I did NOT have the tell-tale signs of a droopy eye OR double vision -- but, he ran the AChR blood tests anyway and set up an MRI. I was VERY lucky -- in a couple of weeks, my blood test came back -- POSITIVE -- and I started Mestinon. Many, many MGers wait for years -- seeing doctor after doctor after doctor -- before they get a diagnosis!!

Thursday, May 21, 2009

Cellcept has gone GENERIC!!! WOO-HOO!!!! So many of our group members take this "wonder" drug -- and, even WITH insurance, the REAL drug co-pay could be pretty expensive. So, quite a few people are celebrating -- and thankful that now they will be able to buy other things -- like FOOD, gas, and maybe pay their utilities. Yeppers, times are hard -- and even harder when you are struggling with an autoimmune -- especially one like Myasthenia Gravis. So many of us are now on disability.

Now for a more "personal" note. My allergies are driving me CRAZY!! We have had so much rain (and I am NOT going to complain -- considering the drought conditions in other areas of the country) -- that EVERYTHING is in FULL bloom and GREEN, GREEN, GREEN. It is pretty much "eye candy". But, my nose, eyes and throat beg to differ. I'm taking my daily generic Claritin AND a Clor-tab. Even then, I'm pretty miserable. Mold counts are HIGH -- and pollen covers the cars. I know that this will pass, soon. The BAD PART is that my allergies KICK my MG into "overdrive" -- arrrggghhh. NOT permanent "overdrive" -- like an exacerbation -- just a temporary worsening of symptoms. I am a glutton for punishment -- the sunshine is so beautimous -- I just CAN'T stay inside -- so, carrying my box of Kleenex, I'm out in the yard, puttering around in the garden, soaking up the sun, etc.

Wasting daylight............more later.

Wednesday, May 20, 2009

It's a new day -- and trust me, that really MEANS something when you have Myasthenia Gravis. Every morning, IF I have gotten ENOUGH (usually 10 to 12 hours) "good" sleep, I wake up feeling stronger -- sometimes, almost "normal". After my first Mestinon has a chance to kick in, I am even better. The early part of the day is when I HAVE to "live my life". I'm like one of those flowers -- as the day goes by, I begin to "wilt". By nightfall, I look and act like I should be in a full-care nursing home. My immediate family has gotten used to this -- but, friends who happen to see me later in the day -- oh my, they are in for a shock.

Gotta go, now -- while my energy is at its peak -- the beautiful sunshine is "calling my name" -- I NEED my vitamin D!!

Tuesday, May 19, 2009

A "New" Day

This blog is currently "under construction" -- that is "shorthand" for: I don't know WHAT in this WORLD I am doing -- so, please bear with me!!

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