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About purplelibrarian

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    Bronze Member

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  • Location
    Long Island, NY, USA
  1. I am now in search of my third rheumatologist. The office staff was awful. The doctor seemed to have given up. I asked about two different medications and he said they weren't proven. Jblake, keep looking. Write a letter to your insurance company and the doctor's office. Make it known that the doctor was horrible! Good luck and keep fighting!
  2. My hands and fingers really hurt and I can't make a fist now. I can't peel an apple with a knife. Also cutting with a knife has been killing me. Any ideas on how to make adjustments? It's very frustrating.
  3. Update: I had the EMG test. It wasn't too bad. It felt like someone was hitting your funny bone. The neurologist tested my arms for carpal tunnel syndrome. Everything is normal.
  4. I used to be more white first, now it is mostly blue-purple. My fingers stay that way longer too.
  5. I went to a neurologist because my hands have fallen asleep during the night. I also have Raynauds. He said I need a nerve test. He wrote a prescription that said EMG. He said it can be painful. He was not a very talkative doctor and I didn't like his vibe. I am going to see another neurologist. Should I go through this test? I read online what it is and it doesn't seem pleasant.
  6. My holistic doctor checked my D levels and they were very low. I'm sorry but the conventional doctor has never checked my levels. Maybe I will ask next time. I take a D supplement now.
  7. Jeannie, Have you met my doctor? She always says to call if you have new symptoms. I didn't know that was not a good sign. I never know what new symptoms I should call about. Is it scleroderma or something else. I usually just wait for the follow-up appointment which is usually scheduled for every 4 months.
  8. Why are doctors so insensitive sometimes? I wish you all the best. I am having a hard time finding a competent (conventional/MD) doctor myself.
  9. Just an update. My primary doctor said I just had an ankle sprain. He would not refer me for physical therapy because he said the rheumatologist knew best. He has an excellent bedside manner but I always get the feeling he has no idea of what he is doing. I want to get a second opinion from the rheumatologist.
  10. Ashu, Doctors can be wrong. It's my body. You say physical therapy is important. Well, my rheumatologist said it wouldn't be of use. I know she is wrong, but I need her referral to get physical therapy. I go to the doctor to see what is wrong. I want a diagnosis. The treatment is my decision. I am going with alternative therapies at the moment. I have had experiences of side effects and the doctors say it's a coincidence or it wasn't supposed to happen. Gee that really helped, doc. I am going to my primary care physician today because my ankle is swollen and it hurts for no reason. I will ask him for a referral for physical therapy. We'll see what happens. I know there are people who have it worse than me right now, but that's what scares me because that may be me down the road.
  11. Thanks for the link to the website. I am doing alternative therapies. I found fish oil has helped with my pain. When I stopped taking it, I was in a lot more pain. I am getting diagnosed by conventional doctors and being treated with alternative medicine. That's my plan, so far. I was tested for heavy metals and took suppositories to remove the metals. It seemed to help get rid of the metals. I feel I am given more attention when I go to an alternative doctor than the traditional doctors. I don't like doctors just writing a prescription and telling me to be on my way. I sometimes feel doctors work for the pharmaceutical companies and not the patient.
  12. I'm 35, female and am new to the forum and was diagnosed with limited scleroderma last year. I can't walk without pain anymore. If I sit for a long time, it is hard for me to get up. My knees hurt. I can't open a jar or anything anymore. I have Raynaud's. Sometimes I have pains throughout my body and don't know if it is scleroderma. The rheumatologist is not helpful. She says physical therapy or acupuncture won't help. I have exercises to do that the chiropractor gave me. I'm just lazy and I hate exercise. I don't want to take medication unless I have to. Another doctor I go to has helped me with my diet. She is trying to get my adrenals under control. I'm just sick and tired of being in pain. I'm just complaining. Thanks for listening.
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