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Thank you for the recommendation for doctors at Mayo. We don't live that terribly far from them (about three hours I think), but I'm not sure we could do that trip. We have 5 house cats and 2 Chihuahuas so I'll have to figure out how to find someone to come and pet sit for us. We have three kids. One in Pennsylvania, one in Indiana and one in Iowa about an hour from where we live. She has a full time job as a pharmacy tech and I don't know about her getting off work for that. I'll have to check on that. I'm going to be having an appointment to get some injections from a pain clinic. When I ride or drive a car my neck really hurts so I can hardly hold my head up straight and I get a terrible headache in the back of my head. I'm wondering if this is a part of the SS. What do you think. Is it fairly easy to get an appointment at Mayo or do you have to wait months and months? Again thanks for the recommendations.
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I don’t know if the neck pain is coming from SS. Could be. Have you ever been diagnosed with any problems with herniated discs in your neck. I do, and yes it hurts. You really need to go to Mayo! Now.
A lot happening in your life!!!
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You had to wait. That is why they call us “patients”. If you have an active bleed like I did you must get it fixed immediately. If you don’t you will get much worse quickly. The operation @janeilene operation to stop the bleed does not remove the iron deposits so you will still have SS. To illustrate my operation was in 2017, for years after that I did not have double vision now I do. So, SS is progressive in the wrong direction. You are in the right place. I recommend that you join several groups like “living with Superficial Siderosis. “ we can help you and give you encouragement