Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 In a message dated 2/13/02 4:47:16 PM Pacific Standard Time, linetech@... writes: << Today was tear city again. >> Susiecue, Oh you poor thing. You just try to hang in there. I know how frustrating it all can be. Please know that we are all here for you. For some reason I think alot of us have been in tear city alot lately. The pred is great for that. I know it's hard to keep waiting on a drug to kick in. My dr told me it could be up to 3 months for Imuran to start really doing it's job. Just keep venting to us as much as you want. You have so much going on and I just wanted you to know that you are not alone in this. This support group is here for everything, not just RP. Please know that you are in my thoughts and I hope tomorrow is a better day. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 Dearest Susiecue, My heart goes out to you! I know the frustration that you're feeling!! I too sometimes feel like things are so out of control, it's so hard to know where to go or what is the best thing to do. At this minute, I'm waiting for my Rheumy to call me, I missed his call earlier. He wants me to report everything, and he is very good about calling me back to discuss every detail. We are owed that by these professionals that we "hire" to guide us. My Rheumy is very adamant that he controls the show. I agree because the medicine that we are using to try to control this disease process has such a profound effect on our entire body, and they are the ones who prescribe and know their effects. So, I believe it should be your rheumatologist who should be your spokesperson. If yours does nothing , you NEED to find a better one who will. I, like you, are going from Dr. to Dr. to analyze and determine how the different body systems are being effected. Tomorrow I go to the Neuro, I have serious issues with headaches, paresthesia and numbness. But the point is, my Rheumy is well aware of everything and is helping me keep it in control and in perspective. If you think your PCP is the one to take charge, just make sure she is able to handle all the aspects of your situation and effectively communicate with you and all your Drs. My Drs have each others' cell phone numbers to talk about me. I feel very fortunate in this, but it's taken over 4 yrs and much suffering to get to this point. Please don't let the tears take over, I know it's hard. You have to stand up for yourself and don't give up until you find the best pros to help you. We all get the best plumber, or go to the best hairdresser, and find the best schools for our children. I'm sorry to be preaching so, but I know, and I feel your pain, and I want so much for you to feel better! I'm here to talk if you would like, and I promise not to preach so much. If I don't hear from you, good luck Friday, and don't let that Dr. leave the room until all your questions are answered! I hope you can rest in body and mind. Carol G Still flaring Well, I'm still flaring in my left ear. Am down to 60 of pred. Hoping the Imuran will kick in soon. It's been 2 weeks. Went for an MRI of my left cheek Monday for the swelling & it showed fatty deposits which is why it is twice the size of the right cheek which is related to, you got it, the pred. I also went to the neurologist today for the dizziness & falling. He said it is a form of vertigo & tinnutis (sp). It is not the normal kind of vertigo & therefore not easy to treat. He will write the ENT and have him do some special tests to check for this. He also touched base with the ophthalmologist about my vision. They will be contacting me about testing for swelling because of the pred. The cataract is also causing my vision problems. I called my PCP today because I am so aggravated. It seems like no one does anything for me. It seemed like the rheumy was only interested in getting me on the Imuran. I had a whole list of things when I went to the rheumy & he did nothing about them. I told her someone has to take control of the situation & be the spokesperson so to speak. She is concerned about my back so she is fitting me in on Friday. I also think I pulled my achilles tendon on my right ankle. My PCP said they didn't think the RP would progress this fast. I can't believe the mood swings I am having again. Today was tear city again. Well, will keep you informed on what is happening. Luv ya, SusiecueDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 Sorry to hear your flaring. Please just hang in there. It will get better. I know when your going through it, it doesnt seem like it will but it will!!!!! Will say a prayer for ya to get that darn flare to go into remission. --- Ted Staniec wrote: > Well, I'm still flaring in my left ear. Am down to > 60 of pred. Hoping the Imuran will kick in soon. > It's been 2 weeks. Went for an MRI of my left cheek > Monday for the swelling & it showed fatty deposits > which is why it is twice the size of the right cheek > which is related to, you got it, the pred. I also > went to the neurologist today for the dizziness & > falling. He said it is a form of vertigo & > tinnutis (sp). It is not the normal kind of vertigo > & therefore not easy to treat. He will write the > ENT and have him do some special tests to check for > this. He also touched base with the ophthalmologist > about my vision. They will be contacting me about > testing for swelling because of the pred. The > cataract is also causing my vision problems. > > I called my PCP today because I am so aggravated. > It seems like no one does anything for me. It > seemed like the rheumy was only interested in > getting me on the Imuran. I had a whole list of > things when I went to the rheumy & he did nothing > about them. I told her someone has to take control > of the situation & be the spokesperson so to speak. > She is concerned about my back so she is fitting me > in on Friday. I also think I pulled my achilles > tendon on my right ankle. My PCP said they didn't > think the RP would progress this fast. I can't > believe the mood swings I am having again. Today > was tear city again. > > Well, will keep you informed on what is happening. > > Luv ya, > > Susiecue > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2002 Report Share Posted February 13, 2002 I will find out more on Friday when I go to my PCP. It isn't painful anymore. It was more so when I was put in the hospital in December when there was the hard not along my jaw & sinus on the left. At least I know what they are going to do although I can't remember the tests. The cataract in my right eye which is caused from the pred is probably causing some of my sight problems & the neurologist wanted the opthalmologist to check for edema in the left eye. It's so hard to take it a day at a time. Susiecue SusiecuI'm really sorry you're having so many problems. I can feel your frustration from here!!! Good job asking your PCP to help coordinate your care, you need that! What are they saying they will do about the fatty deposits? Is it painful for you? I hope they develop a treatment plan that feels like it really takes you seriously and all of your concerns into consideration.Take care of yourself and know that you are in my thoughts. Quote Link to comment Share on other sites More sharing options...
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