I have been sick for several years and it has been a true struggle trying to figure out what's wrong.Some of my symptoms i have had for several years and some of them have gotten increcingly worse the last two years. I have extreme fatigue, headaches, memory problems, concentration problems ,my processing time is awefull, chronic uti's , very high sun sencitivity, hair loss, terrible aches and pains in my hands,legs,arms,hips, finger and toes, "egg whites" in urine, often red cheeks (but not down my nose), swollen eyes, extremly dry eyes, mouth and throut, feeling out of breath,sores in the plate of my mouth and inside my cheeks, rashes on my neck stomach and legs, and often i feel like someone is piercing my body with needles! I am loosing my mind. i Don't have a positive ANA test, i have only tested positive for anti-cardiolipin antibodies. Im waiting for an appointment at the rheumatologist at the hospital, but it is taking forever. Can anyone make sence of my symptoms?? feel so lost when i havn't got a clue wich direction this is heading...
You are not crazy, believe it or not many people go through what you are describing. My wife did. The rheumatologist will look at more than just rheumatoid arthritis. There are over 100 kinds of arthritis many of them are due to an autoimmune condition where the body is attacking itself. The rheumatologist will try to narrow this down and might even throw in the term poly-arthritis which just means you have more than one. I think seeing the rheumatologist is the right direction to go, at the very least they narrow it down so you know what it isn't.
The reason it takes so long is because there is shortage, maybe a severe on, of specialists in this field. Waiting 6 months for your 1st appointment is very common and some have to wait longer. The good news is once you are in and they have a diagnosis, you will not have to wait nearly this long between visits. For example, my wife goes in every 6 - 8 weeks for an infusion of medication that does indeed help her.
If it seems odd to you that they think some kind of arthritis maybe at the heart of this, the belief that these conditions only affects joints is mistaken. In addition to the joints, some of these conditions directly attack organs and soft tissue (sometimes) or indirectly (common). Which ones are affected vary by which form you have. For example, RA can lead to serious eye problems. The reason is because the dryness caused by RA can leave leave eye vulnerable to injury overtime. Long term dryness of the eyes is more harmful than you would think. It sneaks up on you because the process is gradual.
You might consider discussing this with my wife since she has direct personal knowledge of what goes on in examination and what treatment can be like - keeping in mind that her treatment may not apply to you, depending on the diagnosis.
Please let me know if there any questions about this that I might be able to help you with. And if you would like to speak with my wife, just say the word and I will set it up.
- Miles, HypnMorph