Thursday, March 31, 2011

What Would You Do?

I had it all planned out. My next blog entry was NOT going to have anything at all to do with being sick. Well, as the saying goes, stuff happens.

It all started out as a probable answer, another piece to the puzzle of my so called not-so-healthy life. I guess I should back up and do some explaining.In my profile, I mention something about "other" health problems I have. I don't like to go into it too much detail about all of my aches and pains.I have never understood the need to divulge every single medical problem one may have. I've seen forums where people will list everything at the bottom of every posting as if each ailment is a badge they've earned. Oh, I am sure that is not their intent. Maybe they feel as if by sharing they can connect with others who have similar issues. But, come on! By the time we are a certain age don't we all have something?
So, to get to the point. I was born with what is called hypermobile joints...this is a disorder of the body's collegian. My shoulders, ankles, and knees pop out of place at random. I was the one who would be the freak on the playground and at parties putting my body into all sorts of weird contortions. Yea, it can be fun, but it is also painful. Those with the condition are much more likely to develop osteoarthritis. Pain, muscle weakness, frequent sprains and dislocations are all part of the disorder. Those with a severe form can have it affect their vascular system. Thankfully, that does not appear to be something I'm dealing have. Hypermobility Syndrome (HMS) is also called Ehler's-Danlos Syndrome (EDS).

Now that you know some of the background I will explain how this disorder that was lurking in the background came to the forefront of my life. I belong to a message board for those who have Myasthenia Gravis. It's a great place where people give and take information regarding diagnosis, symptoms, and treatment of MG. Well, in the past week or so someone posted something about their recent EDS diagnosis. She went on to explain her symptoms and how she received her diagnosis. Knowing that I already had an informal diagnosis of HMS, by my former Rheumatologist, I started doing some research. Nearly everything I stumbled upon, from the diagnostic criteria (which I believe I meet,) to the effect it can have on your body, I was or had dealt with at one time.

In researching the disorder, I stumbled upon a nationally recognized doctor who not only treats the disease, but he actually has it himself. Well, as luck would have it, the doctor is located right here in Indiana. He's at the opposite end of the state, but he's still in Indiana. After checking to see if he was on my insurance (he is), I called to find out the procedure for making an appointment, knowing that I would need to meet some of the criteria. I spoke to a very nice nurse. She asked me a series of questions, then said she would get back to me after she talked to the doctor. Within a few hours, she called me back and said he wanted me to see a Geneticist first since I didn't have a formal diagnosis.

So, what would you do? Do I really want to start on this journey again? One reason for going through with it is for my children. Both of my daughters show signs of this syndrome. If, by getting diagnosed, it could help them in some way, well, then, it would be worth it. If these doctors were closer to me, then this wouldn't be as big of an issue. But, we are talking five hours away for what is sure to be multiple trips. That's a far way to go with no guarantees. I've met my deductible...not paid all of it out yet, but I've met it. I'm having trouble with my computer now, so I need to close. I'll get back here tomorrow to continue this discussion. In the meantime, I welcome your opinions. Post them, or email me. Thanks a lot for any input! Stay tuned!


  1. First and SO important, is that I love the new look! I usually read your posts on my phone and do not see the graphics. You're going to have to tell me how to find new selections for mine! I'm back to my original, from the few selections that blogspot offers.

    As far as the new doctor is concerned. You know I understand your hesitancy to get in to a full blown, long distance commitment.

    Just to get things started, I think I would find a doctor closer to home. It seems like it will be easily diagnosed and you might not need to travel five hours to see the creme de la creme. As you have found out the hard way, they aren't always worth the trip.

    Let me know what you decide to do. is always something!

  2. Hey Cathy, I did't expect a response so soon It seems as if we are both having trouble sleeping this evening. I woke up to take some cough medicine. Anyway, as always, you made a very good point. Remember my trip to Atlanta? I think what I'll do is try and get in with a Rheumatologist here in town first. Also, I know we have at least one Genetics Dr here in town. Thanks for your words of ya!

  3. Maybe your HMS is what's causing all the pain you've been experiencing recently...After reading roguepuppet's posts about EDS I did lots of reading, something else for you to consider being sero-negative...Maybe not MG after all, or maybe both...I know you're following her EDS blog, you might also want to follow The Myasthenia Kid, she has EDS, POTS and possibly MG. They keep changing her MG dx!
    Now you need to decide how confident you are with the local rheumatologist. Or will it be in your best interest ti go and see the other guy? What does Tim think?

    Totally agree with Cathy, love the new blog design! I almost chose this one as well, I love the color and all the flourishes.

  4. Rachel, I really think I have both. The weakness and breathing problems are helped so much with the Mestinon. I do need to talk more with Tim about all of it.
    I'm glad you like my new design I have something else that I'd like to do, but I'm not sure how to get it done.