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Thread: Hello from Alaska

  1. #11
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    Anita, when I was at my lowest point and very acutely ill about a year ago, I could not even get a local rheumatologist to review my records, let alone see me, despite pleas from my ENT. You would think they would see it as an opportunity, since we are such "special" cases. I don't know anything about who is in AZ, but I'm pretty sure you can find an experienced rheumatologist in Seattle through the Virginia Mason Clinic, Polyclinic, or University of Washington. btw my insurer covered my travel for initial rheum eval, as a I had a letter from my internist stating that out of state evaluations were necessary. Since then I've had to change health plans and the travel is all on me.

    Considering our state's population of less than 1m, five or six patients sounds about right.

  2. #12
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    Quote Originally Posted by Alaskangirl View Post
    Thank you, I am calling the neuro doc in the morning. I am in PT for my back surgery, and he said the same thing. Glad to hear from another Alaskan. Stay well.
    Hey, you two are both in Anchorage. You should meet up some time. Meeting another Weggie is a good experience in many ways..... the forum already makes us feel less alone with this crappy disease, but meeting each other really brings it home. I've met three Weggies myself, that I know of.

    Alaskangirl, I hope you get some answers and some solutions soon. I, too, am single, and can relate to the difficulties of that, and the limitations of funds to travel. I live only an hour or so from Seattle and still have trouble thinking about going there for treatment. I would have to if I was having the problems you are. BTW, we have heard great things on here about the Casey Eye Institute in Portland. I wonder if your docs up there could consult with any of your mainland docs about your case.
    Anne, dx'ed April 2011

  3. #13
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    Thanks Tom, Are you in the Anchorage area? So the tingling electric shock feeling I am getting in my leg and face is continuing and I fell a couple of days ago. I called my surgeon, my R/A doc, and they just don't seem interested. I guess if I had a lot of money and was someone important they would pay attention to me. I hate this feeling of not knowing what is happening to my body. Which I am sure everyone on this site has experienced. I tried to talk to someone about going on disability, but they said I am not eligible because I am working. I am working because I need the insurance and a roof over my head. Some days it is such a struggle just to get out of bed. Ok, I am done complaining for now. LOL! Thanks, for your ear. Have a great weekend.

    Alaskangirl/Anita

  4. #14
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    Quote Originally Posted by Alaskangirl View Post
    I have been told there are about 5 or 6 in Alaska that have WG. I was in contact with one person here in Anchorage, but when I started having the leg pain and then finally having back surgery I lost contact with him. Other than the person who is on this site, I haven't been able to speak to anyone else. I called my docs yesterday, and between 3 doctors you would think I could have been able to get in to see one of them, but the earliest I can get in is March 19th. Really? Very frustrating. I was told that any rheumatologists that come to town to practice end up being booked for several years. We only have two here that I know of. I am considering going to the Mayo clinic in Arizona. But they have about a 4 month wait list also.

    Have an awesome day
    Anita in Alaska where we don't have hardly any snow. (Boston has it all) the joke today is that we need to move the Iditarod to Boston.
    Have you checked out Mayo in Rochester, MN? They may have a larger staff and shorter wait time to get in?
    Knowledge is power! Wisdom is using it to make good decisions!

  5. #15
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    Anita,
    I am wishing you all the best in finding the right doctors to evaluate your condition. I'm glad that you found this site, there is so much knowledge here. I would think that your back surgeon would have answers to the pain and weakness in your legs. I hope you find the answers soon. You should maybe investigate more on trying to get disability, I know that you can work some. Take care of yourself and let us know what's going on with you.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  6. #16
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    Hello. I read that you are currently taking azathioprine.... I tried switching from cyclophosphamide to that drug and the first time ended up in the hospital with first stage renal failure and also stroke like symptoms, the second time i was reduced to using a walker combined with nausea and severe pain. needless to say I stopped taking that drug. As far as the neuropathy, I can relate to a degree. I developed tremendous foot pain to the point of not being able to stand or walk for more that 10-15 minutes at a time. No amount of morphine seemed to help (unless it knocked me out). My GP prescribed Gabapentin for this and it has done wonders. I currently have little to no foot pain at all. I wonder if this might work for your leg pain? It might be a stretch but could be worth asking your doctor about??

  7. #17
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    Hi Anita, yes I am in Anchorage. Sorry you are in such a tough spot.

    Initially I mentioned contacting your surgeon because I thought maybe your leg symptoms could be signaling some kind of recurrent or new disc issue. I think sometimes surgeons are not that interested in post op follow up, unless they think there is something specific they can fix. They are technicians, and once they've done their thing they may not feel they have anything to offer. Plus we have the added challenge of being in a small medical community with little competition in the market and very busy doctors. Sometimes just getting past the front desk is a major challenge. It's not a good place to be a patient sometimes!

    Somebody else mentioned seeing a physiatrist, i.e. a physical medicine and rehab specialist. Sometimes when people have a constellation of mysterious symptoms a physiatrist can put it all together, and they can do diagnostic testing and make appropriate referrals. It sounds like you have a lot going on, so maybe they can sort out what kind of specialists you should be aiming to see. There is a major physiatry clinic here that you may be able to get into pretty quickly. Dealing with a big clinic like that can be daunting, and it sort of "luck of the draw" as to who you will be dealing with and how helpful they are. But if you don't have a rheumatologist who is responsive to your concerns you might consider that. Another thought is to see a primary health care physician, like a family practice doc, to get a referral or order some testing, or at least have someone listen to you and give you some direction.

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