Myasthenia Gravis

A few weeks ago, I saw a neurologist in Bloomington who ran several tests for different neuromuscular diseases. One that he thought may explain a lot of the problems I've had is a disease called myasthenia gravis which is an autoimmune disease that causes neuromuscular problems such as pulmonary weakness and significant muscle fatigue.  Also, a large percentage of people with this disease have thymic hyperplasia. While the blood test for one of the antibodies was negative, there is a form of it called seronegative myasthenia gravis (SNMG).   He started me on the medication called pyridostigmine to see if I had a positive reaction on Tuesday.

So far, my breathing has become easier and I can take deep breaths without feeling like I have weights on my chest. My walking has gotten a little better but not much. The neurologist's office said they didn't expect me to get completely better, they were just hoping for minor improvement.

They'll keep me on the current dose for a week and then increase the dosage and maybe add a few different medicines. Hopefully, this will be the beginning of the end to some of this diagnostic nightmare. I'll post more as I know.

insurance

I just found out that IBM WILL INSURE SHAWN!!!!  I was pretty sure they would be I can't tell you how big of a relief it is to know for sure.  They said that since his reason for not being a full-time student was due to illness that he'd qualify for coverage under their policy.

Thank you IBM.  (and an even bigger thanks to Alison who was a huge help in navigating this particular issue.)

sleep study, insurance woes

Tonight Shawn's spending the night in the Bloomington Hospital so that they can watch him sleep. The pulmonologist suggested this to see if he might benefit from oxygen at night. So he's all hooked up to pretty wires for the night. Here's a self-photo taken from his iPhone.

Looks like it's going to be a fun night.

He's been told it may take a few weeks to get results.   Where have we heard that before?

And while Obama tries to get some sort of Health Care bill passed, we're having our own horror story of  health insurance worries...

I can't tell you how wonderful it was to not have to worry about full-time student status under my company's new health care policy, which started on June 1.  This change was instituted  in anticipation of the new Illinois state law which would have required it by the end of the year.  And it was such a HUGE relief from the previous year when we spent so much time worrying about how he'd be able to continue to be full time after missing so much class because of hospital visits.  This state law was just incredible for us.  No more worrying about how many classes he had to enroll in for the rest of his college career - he could take some classes online (which count toward graduation but not toward student status).

But now my company is being bought by IBM, which is  exempt from the IL state law because they are self-insured.  IBM's policy requires full-time status after the age of 19.  And Shawn is a) 20 and b) not a full time student this semester, because he wasn't going to need to be anymore.

I'm choosing not to panic just yet.  There is a clause in the IBM policy dealing with exceptions for illness, and their HR is 'looking into' it.  Surely this will all work out.

Meanwhile it's all happening SOON.  The current timeline will have us on IBM's benefits by November 1.  So I wait with bated breath (but not panicking, I'm not going to panic, it's all going to work out. No panicking here.  Maybe a little stress, but no panic.  Not sleeping so well, come to think of it, but no, not going to panic. Not just yet, anyway.)

waiting for results...

And while my little friend below is waiting for his train, we are once again waiting for results. Shawn had some blood tests last week, that have to be processed at the Mayo, so probably won't be back until next week sometime. Also an MRI on Tuesday.

Yesterday he saw his U of C hypertension doctor, who is keeping him on the current cocktail of blood pressure medicines, with instructions to keep monitoring it and let him know if there are any changes. For now, the spikes remain in the 160 range, much much better than 240!

Meanwhile, we are buying a condo in Bloomington for Shawn to live in for the next few years. It's a two bedroom place which will make it much easier for us to come down and stay with him. In the last few days we had the inspection on the condo, Shawn found someone to sublet his current apartment, and we moved all his stuff into a storage locker. As always, the amount of stuff to move grew as we started packing it and the estimate of how long it would take kept increasing throughout the day. (Perhaps that trip when we were all the way across town before Shawn called to tell us we forgot to get the KEY didn't help... but that was just one of many trips!)

Now it's all moved, Shawn's staying in the basement apartment of one of his very generous friends from his support group, and we close sometime next month.

Waiting for the train

I don't know if this little guy paid full fare or not, but it
certainly looks like he's waiting for a train!

New doctor, more tests

Shawn saw a neurologist in Bloomington today to talk more about neuromuscular weakness. He has some ideas and more tests to do, including blood tests and another MRI of the neck.

MRI is scheduled for next Tuesday, and he sees his doctor in Chicago on Wednesday. We are on our way back to Chicago now. We will drive back down next Monday, then bring Shawn back to Chicago after his MRI on Tuesday. And then he'll fly back to Bloomington after Wednesday's Chicago appointment.

I think my car knows the way between Chicago and Bloomington on it's own now.

Sent from my iPhone :-)

Funny sight, or maybe a little sad

The building next to the neurologist's office this morning had a sign on the door: "Smoking Cessation Class Enter Here." Right in front of the door were four women standing there - you guessed it - smoking.

Perhaps they were working up the courage to go in? Or maybe acting as a picket line to discourage others from entering?

I would have taken a photo but somehow I think they might have been offended.