Have you found it difficult to get specific answers from your dr? I like my drs but they are often vague or don't answer my questions. I'm not sure if it's because they don't know or they are just putting me off. For instance I have had a lot of trouble with muscle spasms and twitches. They were incessant for months. Imagine trying to go to sleep when your body can not be still. I never got an answer as to why it was happening other than that it might be the prednisone. It is much reduced since I started 150 mg of immuran so I think the twitching is a symptom.
I am really feeling a need to know my prognosis and I did not push for this because it took so long to get a diagnosis and also I felt the drs were not that certain (they said I don't have lupus but keep running the lupus tests). But I have been like this two years, not knowing if I can get back to normal or need to make changes in my life and it is just so hard. I really need to know what they think is going to happen to me. I have lost much of the feeling in my left leg and am starting to lose the right, and my hands. I have no idea if that is a serious problem or not. Anyway, I am feeling nervous and frustrated and just need to vent I guess. I want to know but am afraid to know what they think and I have an appt Thursday with the rheum. Not sure what the point of this post is but at least I feel better for posting!
Laker
Laker,
They may not know what is wrong with you. I can't imagine how frustrating that can be. IMO there is still so much that is unknown about RA and other autoimmune diseases that the docs are doing the best they can, but they just don't know much. It is really sad that so many people are affected by it and it is 2007 and we still don't know much about it.
Hang in there....Phats
I established my communication needs with my doctor from day one so no I haven't had any problems getting answers. And frank communication is important to getting the answers you need. One thing to understand though is what kind of questions are answerable. In an inflammatory disease such as lupus or RA prognosis is not really able to be specifically answered.
Ask general questions-write them down before you go. Be prepared with follow-up questions, even if you already know the answers. It is always interesting to hear the answers.
But most importantly talk to your doctor. They are not mind readers and like those school teachers of yesteryear will assume you understand and have no questions aboout what he has told you. You have to speak up
I don't think at this stage of the disease you'll get a prognosis. If you're like most of us you take it one week at a time and sometimes one day at a time. I don't expect a prognosis, I'm just living my life for the moment. I did have a doctor tell me that I would be in a wheelchair in 5 years. He certainly didn't appear to have a crystal ball to look into to predict that. He wasn't even a rheumatologist. I laughed at him and told him that he had made that statement to the wrong person.
It's hard not to worry about the future but if you spend your time doing that then you'll forget to live in the present. Make the changes that you think should be made. This waiting game is the hardest part of having these diseases. It make for an uncertain future. I don't have any real answers for you; I can only tell you what has worked for me and that's to live for the present. Lindy
"It is really sad that so many people are affected by it and it is 2007 and we still don't know much about it."
Yes it is sad what we don't know yet, but we have come so far in the last 20 years both in understanding and treatment. Its amazing how far the research has come since the advancements in computer technology.
Wow, now twitching from prednisone???What else does this drug to to us? I'm seeing my doc tomorrow, and will ask as my legs were weird last night, nerve stuff 'like you would think you have with restless legs?" , but not as bad (i haven't had it but I have had this feeling before). Geeze i sure hope I can get this pred overwith. (7 weeks from tomorrow by reducing by 1 per week!, seems like a long time). sarah lyndaHurts,
Pred is the devil! I swear! I hate it, but can't live without it.
Buckeye, you are right, we have come a long ways. I suppose those who have had it much longer than me would know that much better!
Phats
I don't think the twitching was from the prednisone, as it did not correspond to my taking pred or to how much pred I was on. I think it was more likely from a lack of blood and nutrients to the muscles or from the nerve damage that has been going on.
Laker
Laker,
I felt just like you at the beginning. I wanted answers from my RD that were not possible. But when I went off my meds for 3 months, did not tell him and went into a full body flare, that is when he told me if I did not take my meds I would be in a wheelchair in 2 years.
I have been diagnosed for almost 5 years now and I still get frustrated by not knowing what will happen, but really, none of us knows that healthy or not. So we have to get on with the business of living today. It's all we can do.
It gets me down sometimes as I simply cannot deal with all the changes in my life. But we gotta hang on and keep trying, cause the alternative is worse.
Hpe you get some relief from all the muscle spasms. I sometimes take Soma and it helps some. You might ask your RD about it, to me it works better than the other muscle relaxers.
Yes Laker I find it hard with my rheumy, he seems to dodge questions, do you have an arthritis foundation that you can phone and have a chat with one of their advisors, they can usually point you in the right direction to get the answers or sometimes give you the answers, we have a great foundation here and they encourage us to phone anytime and ask away, they get back to you if they can't help you, let me know if you have any luck, best of it to you, Janie.Laker, how long have you been on the macrodantin? I looked it up and what I kept finding was that if you have nerve damage to inform your doctor. I also found one of the common side effects of it is muscle and joint pain. You list in your meds that you are on singulair. Is that for allergies or asthma? I also kept finding if you have lung disease to let the doc know about that.
It is so hard to get a prognosis with ra since it affects all differently.
What do you mean by get back to normal? Mine changes all the time and I have to adjust to that. I wish I could go back to last summer where my normal was well...you would never know I had ra unless it was bad weather. Now my normal is completely different. Maybe after 2 years it is time to start thinking about making some lifestyle changes. There is still a chance for you to hit a really good remission and return to a lot of your more physical activities you may have enjoyed before all this started. Sometimes it just takes playing with meds. And that can be quite the process sometimes.
Hi Laker,
I had a ton of 'nerve damage' or something similar when I was getting diagnosed. I had some sort of restless, jumping legs going on as well as numb wrists and hands that managed to spread to my left foot but not my right. Go figure! It was not carpel tunnel. There was also this sort of 'biting' feeling going on just above the front central left ankle. They ended up sending me to neurology for an evaluation for MS - but it wasn't that.
It all went away on AP. My point is the fact that this was so 'unusual' for RA is what finally lead my doc to diagnosing Palindromic RA but I don't think any of the PRA people ever mentioned this as a usual symptom of this disease.
Pip