Post # 1
I know a similar thread was posted recently about not trusting what your doctor says, but I’m sick bees and I need to vent for a minute. I’ve been sick for a while, but specifically the last 3 months have been the hardest and now I’m at a point where I just want the doctors to find out right this second what’s wrong with me. I know it can be a slow process, but I can only take so much, the people around me can only take so much, and I can only miss so much work! And I can’t do FMLA leave at work, because I would have no way to pay my mortgage or medical bills. I just want my life back, I’m so tired of being tired and in pain.
I am seeing a neurologist and a rheumatologist right now. I posted the other day about having an MRI done, but I don’t see the neurologist until next week for the results. Today the rheumatologist called and said the blood work that he ordered for what he thought I had came back negative. I had a feeling it would, because I have none of the primary symptoms for the condition, only some of the secondary symptoms fit. But, he still thinks I have this condition and wants me to take the medication for it for 2 months and see if it helps. His thinking is based on another blood test that isn’t specific to the condition and could be positive due to many other conditions.
Basically, he wants me to take a drug for a condition that there is little evidence I have! Maybe that’s the best fit, but if it isn’t what I have, that’s another two months in this same situation.
I have an appointment with the neurologist next week and I will ask for his opinion on the situation. Maybe he can reassure me it is the correct diagnosis or save me from taking unnecessary medication.
Post # 3
@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
@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
@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
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 # 7
thank you for all the kind words and advice ladies! Sorry I haven’t replied, I’ve had a lot going on obviously… I did go see my family doctor and he said he works with that rheumatologist a lot and he is a very good doctor. He said he did understand my concerns and he kind of thought the same thing I did, BUT the rheumatologist has to have his reasons for making the diagnosis he did. He said it is very frustrating because my case is not black and white, but the medicine I was prescribed is very serious and doctors don’t just prescribe it all “willy nilly” so the rheumy must think there is evidence beyond a reasonable doubt.
That did make me feel better, so I have decided to try and see if the medicine helps. My family doctor also said it was a good idea to keep my appointment with the neurologist, so hopefully I will feel even more confident next week!
Thanks again, some times it makes you feel better just to know people are listening and you aren’t stuck trapped dealing with it all yourself!
Also, if anyone can recommend any good health forums I would appreciate it. I looked up forums for the specific condition, but they weren’t very active.
Post # 8
@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
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!