I just want to know what's wrong with me!

posted 3 years ago in Wellness
Post # 3
435 posts
Helper bee
  • Wedding: November 2014

@ceemarie7:  I hate that doctors these days just treat without diagnosing. It is like he is crossing his fingers that you have whatever condition he picked. You would be wasting the two months… Ridiculous. Definitely get a second opinion from the neuroligist. Maybe see a new doctor in addition to the neuroligist. Someone somewhere should be able to diagnose you! You can’t be the first person with your symptoms.

I hope everything gets figured out, and you start feeling better.

Post # 4
42117 posts
Honey Beekeeper
  • Wedding: November 1999

@ceemarie7:  Many patients say the hardest time in their illness is the time getting a diagnosis.

I am sorry you are going through this and hope you get your diagnosis soon so you can get treatment.

Post # 5
525 posts
Busy bee
  • Wedding: October 2014

@ceemarie7:  I would really wait until you can talk to that other doctor about it – he may have found something that is contrary to what you’ve been told to take. I would never just start a medication if something didn’t add up for a diagnosis – I would rather have more tests than take a medication that could potentially mask the symptoms of another condition.

Even with my family doctor he seems too eager to just give me something to shut me up when I am having problems.

Post # 6
3769 posts
Honey bee
  • Wedding: December 1999

I hope you get your answers soon. While I am pretty resistant to taking un-needed medications, we rarely will take antibiotics, if you are haing symptoms and so far nothing has helped I would give it a try until you are able to get more answers. Nothing is worse then not knowing what is wrong and having nothing help make it better:(


Post # 8
1333 posts
Bumble bee
  • Wedding: September 2014

@ceemarie7:  That is frustrating. I went through something similar a few years ago, and even though I am still in a lot of pain, the uncertainty and hopeless feeling was the worst. Medicine is much more an art than a science, and depending on the condition, tests and symptoms can be consistent or can be a probability. I am not a doctor but my parents are and my social scene is like 90% doctors, dinner conversation often turns to strange presentations and unusual diagnoses, so from that I’ve heard about these strange cases. My own illness was a very atypical presentation, which delayed my diagnosis for many months. If your rheumatologist is good, he may have his reasons and experience to believe what he does. I’ve known good experienced old school doctors who can diagnose these strange presentations against the obvious. Or, his feeling of helplessness to make you better may be making him want to try a Hail Mary pass. But if your presentation/illness were typical or common, you’d probably have a diagnosis by now. Does the medicine he wants you to try have nasty aside effects? Would it interfere with other tests or treatments? If not, or even within reason, I think it could be worth trying while you pursue other possibilities as long as the neurologist doesn’t have a better idea, or if (s)he says it won’t hurt what (s)he wants to investigate.


Obviously since I am not a doctor, I’m not qualified to give you medical advice. But from the perspective of someone who pursued a diagnosis for almost a year before finally having to have diagnostic surgery, which at that point was the LEAST drastic/invasive option, that is what I would personally do in your shoes. I hope you get a diagnosis and start feeling better soon. 

ETA: sorry I realize I misread your latest post and you are trying the med. I really hope you find relief soon, OP!

Post # 9
18 posts
  • Wedding: August 2014

I saw this post and just wanted to add my experience. I have something called Mixed Connective Tissue Disease – this is a relatively rare autoimmune disease and it is basically a mix of lupus and RA among other things. This disorder tends to run in families. Here is the interesting part – my mom has had all of the same symptoms as I have, and her disease is further along (being older). Yet she does not produce the antibodies (ANA etc) that will give you a definite “yes you have it” diagnosis at the rheumatologist. However, her rheumatolgist told her that a full 30% of patients with RA/Lupus and other autoimmune disorders are “seronegitive” – meaning they don’t produce the antibodies in their bloodwork but are fully symptomatic.

This fall I started having symptoms, went into the rheumatologist, and for some reason I do produce the antibodies they look for. Same disease between mother and daughter, one produces antibodes and one does not. 

I am not a doctor and cannot tell you whether you have something or not, but this could by why you are being treated for something that doesn’t show up as a “positive” in your bloodwork. It has been my experience that General Practitioners (your primary doctor) are not as familiar with the seronegative possibility as a rheumatologist.

Whatever you have, I hope you get relief soon!



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