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Thread: 4 yrs & no definative diagnosis....looking for dr suggestions

  1. #21
    Quote Originally Posted by Ian B View Post
    Personally, I'm not convinced I have HSP as I have symptoms that simply don't fit...
    Oh, how frustrating and maddening!

    And SirGCal, to go to all that expense out-of-pocket and still not have a definite diagnosis. I'd always heard Mayo was the "best of the best," but maybe not so much!

    Well, I know there are good neuros out there, and some of the members here seem to have found them, so I wish us all good luck on that quest.

  2. #22
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    Quote Originally Posted by Bonnette View Post
    Oh, how frustrating and maddening!
    More so when said symptoms are usually associated with diabetes or MS, the former is easily checked for, but the latter............

  3. #23
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    Quote Originally Posted by wheeliecoach View Post
    Same here...but mine was diagnosed as Primary Lateral Sclerosis...which seems to be in the same family as HSP.
    Yes, I believe they are the in the same family of disorders and in a broad sense PLS would cover me as I have issues with my arms (spasms) and hands (fingers involuntary flexing into a fist shape) At one point I had problems swallowing as well, tho' thankfully this episode was short lived and there's been no recurrence.

    I went from being initially described as a medical enigma, to *definitely* having Syringomyelia (soon disproven) to some form of Ataxia, with various other suggested dx inbetween, before some time after first being investigated being told it was HSP.

  4. #24
    i had the same original symptoms as you. was miss diagnosased by 2 hospitals and a slew of specialists over a 4 month period. finally went to johns hopkins hospital baltimore, md. where they found a DURAL AV FISTULA and corrected it on sept.1 2009 am currently partially paralized from the waist down but i am improving weekly with the right treatment. you MUST not give up and get the proper diagnoses as the only way you will improve is when you know what is wrong so that you can be treated properly. i wish you the best and you have come to the right place for info as the people at CC are wonderful and always try to help. best poobear [please forgive the spelling]

  5. #25
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    Thanks for all the suggestions and it's reassuring to hear that other people have gone through similar things. I see my primary care doc next week so I'm taking the assorted suggestions from here to her to see where she wants to start. I have a message into Barrows about an appointment as they take my insurance...I'm not to the point of desperation to pay out of pocket at Mayo.

  6. #26
    Good, so glad Barrow is a possibility for you! Best wishes with your primary doc appointment and the whole diagnostic process - do keep us posted.

  7. #27
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    Update

    So the update is that Barrow's won't take me as a patient without a definate diagnosis (grrr). I had been trying to find a physical medicine doctor that takes Blue Cross insurance too. Who would've thought that it would be this hard to find a doc when I have amazing insurance through work. Apparently there is a Center for Physical Medicine & Rehab in Phoenix. I have an appointment in 4 weeks with them. The best part is the nice lady on the phone reassured me they have other patients with similar symptoms. Fingers crossed I've finally found a helpful doc office.

  8. #28
    Quote Originally Posted by sledgrl View Post
    So the update is that Barrow's won't take me as a patient without a definate diagnosis (grrr).
    Talk about a Catch-22! That's why you wanted to go there in the first place, to get one!

    Apparently there is a Center for Physical Medicine & Rehab in Phoenix. I have an appointment in 4 weeks with them. The best part is the nice lady on the phone reassured me they have other patients with similar symptoms. Fingers crossed I've finally found a helpful doc office.
    Well, maybe this nonsense with Barrow and the others you've tried will prove to be a blessing in disguise - fingers crossed!

    Thank you for this update. I hope the next four weeks will go fast and that you'll be very satisfied with the center in Phoenix - keep us posted.

  9. #29
    Quote Originally Posted by sledgrl View Post
    So the update is that Barrow's won't take me as a patient without a definate diagnosis (grrr). I had been trying to find a physical medicine doctor that takes Blue Cross insurance too. Who would've thought that it would be this hard to find a doc when I have amazing insurance through work. Apparently there is a Center for Physical Medicine & Rehab in Phoenix. I have an appointment in 4 weeks with them. The best part is the nice lady on the phone reassured me they have other patients with similar symptoms. Fingers crossed I've finally found a helpful doc office.
    Blue Cross isn't great insurance at all... I used to have it myself and it was by far the worst insurance I've had. A lot of doctors even refused to service me because of the trouble filing with that insurance company; or I had to pay out of pocket and go after the insurance on my own (NONE of which got reimbursed).

    They used to be good. But no more. Humana was the best insurance I've had. Unfortunately no longer an option. Now with UHC, I'm not happy but... it's better than it used to be... At least I don't have a max $ lifetime anymore...

    Anyhow, if your work has other insurance options, you might consider changing at the next open enrollment since you have an actual medical problem. It's fine for the majority of people who just need physicals and checkups but those of us who depend on our insurance to 'live', it's been anything but reliable. Infact, of the local MS support groups, disabled support groups, etc. that I deal with (few thousand people), I don't know anyone who had Blue Cross and liked it in the long run. Not a single one. Granted I don't know everyone around here but when talking insurance and the word 'blue' comes up, eyes tend to roll.

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