I am going on 2.5 years of trying to figure out what is wrong with me. So far we have concluded that I have a elevated CPK of 400. I have had a muscle biopsy that said there was muscle damage but we don't know where its coming from. Do I really need to know why? As of now its just something that I deal with in physical situations... shoveling the snow, walking the dog etc. So if I go through lots of expensive testing and I find out what it is, will that really help? I will probably just deal with whatever it is since most of the stuff they are testing for has no cure.
Do you all think it was worth finding out exactly whats wrong?
Just like you said, in Western medicine, the diagnosis drives being assigned a disease (disease naming ceremony) which then attaches a diagnosis code ....and that code triggers as you've said here a series of courses of treatment which may or may not do anything at all, or a hung face and ahem I'm sorry nothing we can do.....Personally, I had such a hard time actually defining what symptoms I had, defining them in a way that matched the doctor's diagnosis methods that it took more than 8 years to be diagnosed with multiple sclerosis. 5 years later, my docs still aren't really sure I have normal MS because it differs so much from the current categories....so now they diagnose new diseases on top or as possible to the point that many docs find me too complicated to treat or they lose the focus of important things to me such as keeping me alive and as comfortable as possible with medicines that do as little harm as possible in the progress.
Over the years and after many years of being classified as a hypochrondriac, I finally realized that it was my style of talking, my mannerisms, and the way I presented my symptoms that was causing poor treatment from doctors, not getting a good treatment plan that addressed my symptoms and needs or getting the ultimate; legitimizing what you have into a name that generates SS benefits perhaps or services from a disease support organization and so on....
I'm rambling...What do you all think? What has your experience been?
If it were just me and I had no one else to worry about, then I really could care less what I have. I had some of the same symptoms you have with a slightly elevated CK level but very little muscle problems except in my hips. Was diagnosed with what they thought was a mild form of LGMD....this was 20 years ago. Now I have been married for 16 years and have 3 children and find out I might have FSH MD instead. So, I go from not caring to having 3 children who may have a 50% of getting the same thing. Totally different when your children are now involved.
If it's just you, you don't have any children and you don't ever plan on having children, then yeah, who cares. If there is any part of you that wants to have children someday, then find out what you have for them.
This is really a tough call, one of which a lot of us face. On the one hand, if there's no treatment, why bother putting a name on it if giving it a name isn't going to change anything. I've been dealing with this myself for about 10 years now.
But the other side of the coin is like this -- unless you have a confirmed diagnosis, if/when there are clinical trials or treatments do become available where a person might benefit, you have to have a confirmed diagnosis before you can benefit from any possible treatments.
I am in the midst of my third attempt to get a definitive diagnosis for my neuromuscular issues. Part of MY desire is to get a better handle on the possible progression so I know what to expect in the future. My doctors agree with this, but also sited the "need a diagnosis for any possible treatments in the future" as another reason to go ahead and try to find out.
But I think it's up to the individual and that person's medical team to decide if it's worth the time, money and hassle to pursue a name to place on the illness.
Like many of you, having a definitive diagnosis (and then several and now more than a dozen diagnoses) has allowed me to qualify for social security benefits, qualify for specific state benefits, able to get pharmacy help in paying for services, access to disease specific societies who often offer help paying for things not typicaly covered by insurance i.e ramps, wheelchair lifts, hand controls, short term adhoc CNA/nursing care as examples.
Getting diagnosed with a genetic disease helped us identify other family members with that same disease incuding one of my children (the other has declinied to test) and helped explain many symptoms.
Getting diagnoses has the benefit of giving Western Medicine the ability to develop a treatment plan......
Getting a specific diagnosis helped me get family members to "believe" that I was really sick and in many cases to help me in supporting my needs for caring for mysef for example...Still I face comments from family members such as "I exaggerate my symptoms to get attention or to not have to participate in an activity and even more ugly, that perhaps I shouldn't be able to care for my minor children because of my illnesses.
The problems come in for me now because I have SO MANY definitive diagnoses and even more probable and possible ones is that I am deemed to complicated by many doctors, I am turned away by home health agencies as to complicated, and I battle the side effects of one treatment versus another.Still because I achieved the benefits mentioned above; I am able to live a reasonably acceptable life as I still search for better ways to treat my illnesses, symptoms, etc.
I have and encourage others regardless of being diagnosed or not; to embrace natural methods of medicine and healing such as healing leaky gut, finding the healthiest eating program you can with the most natural foods not marred by environmental toxins, pesticides, preservatives, chemicals, identifying vitamin and mineral deficiencies; finding ways to incorporate some type of exercise in your life (often difficult for example for me when I am in severe pain or have no mobility at all but options are available such as exercising in a wheelchair or modifications to existing exercise programs); and if you can afford it identifying a holistic or naturally minded doctor(s) who can help you make the best choices to bring you to as healthy a state as possible.
So I think there are many sides to whether it matters what the real diagnosis actually is and it may depend on the situation. Ultimately and most important is making the best choices to keep you as mobile, active and healthy as possible and to educate family and friends about things you learn along the way especially for conditions which run in your family lines or when you need o want friends and family to understand how you are doing; when you need help, when you don't.