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

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    #16
    Originally posted by Ian B View Post
    I'm not SCI and my neuro at the time told me my lumbar puncture seemingly showed the presence of protiens that indicated cancer or MS, but both were instantly ruled out. He went on to say *something* was obviously going on, but he'd no idea what. It took misdiagnosis from subsequent neuros before it was finally decided I had Hereditary Spastic Paraplegia by a specialist in this.
    Same here...but mine was diagnosed as Primary Lateral Sclerosis...which seems to be in the same family as HSP.
    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

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      #17
      Since the Neurontin makes very little difference, why take it. Perhaps try some alternative medicine, Herbal, accupunture etc.ds

      I have an elderly friend who can't walk when he takes Neurontin and can when he doesn't. By walking, I mean somewhat functional.

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        #18
        Originally posted by sledgrl View Post
        Thanks for the suggestion of Mayo. I to have heard they are great. Unfortunately they don't take Blue Cross Blue Shield insurance from Arizona. It's crazy that I have amazing health insurance through my employer but Mayo won't take it. I'll keep trying to get into another neuro doc in Phoenix.
        I agree, keep going to Neuros until you find some that make sense. I've been to over 20 myself INCLUDING the Mayo... And they aren't all that... They are convenient but still just doctors. After spending $25k out of pocket, they didn't find anything and were still inconclusive, falling back on MS like they all do.

        Originally posted by Eileen View Post
        Sorry that you are going through all this sledgrl. It does sound like you need to see a specialist who can offer the sophisticated medical testing only available at larger cities. Please go see someone with expertise in neurology. Wishing you answers and treatments that are effective.
        It's not the cities per-say, but the doctor themselves. I've been to the Mayo, and all they have are all the toys but I found their skills at diagnosis to be a bit lacking... But since I didn't have insurance they took (today, my insurance is covered there, but not when I went... They went in-network in Nov last year... sore subject.), they rolled me over the coals during billing... But they pushed me in and out just as fast as they could and immediately just said "must be MS still even though we can't find anything" again. I went there to get them to dig deeper, they won't. In retro-spect, I sold my motorcycle and have no vehicle, for nothing. I wish instead I had something to get me and my wheelchair around comfortably. Hell, I could have got a bran new something nice for that type of coin... Anyhow... Far more important though is to find a neurologist who you trust and can explain it so that it makes sense to you. That's the key right there. One who refuses to stop looking for possibilities is even better yet. My only regret right now is mine is getting close to retirement... And I'm sad. He's excellent.

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          #19
          Originally posted by Patrick Madsen View Post
          Since the Neurontin makes very little difference, why take it. Perhaps try some alternative medicine, Herbal, accupunture etc.ds

          I have an elderly friend who can't walk when he takes Neurontin and can when he doesn't. By walking, I mean somewhat functional.
          Also, neurontin is a progressive medication. You might not be taking enough. When I took it, I took 5 of the largest pills, three times a day due to my very strong natural resistance to medication. Today they said enough with that (plus the Generic sucks and makes me sick) and I'm on Oxycodone now... But it in itself is a real PITA to deal with so...

          A good neuro will work with you to find the proper medication for you and the proper level of that medication. Especially where something like Oxy, it is very easy to take too much to get very stoned, or worse. But not enough and it won't do squat. And we're talking mg here... Not huge amounts... Plus over time you may build a bit of a resistance to medications. Again, why you need a good doctor who pays attention to you and not just shuffles through the body count to get to his golf game.

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            #20
            Originally posted by Bonnette View Post
            Hi Ian. Yes, with neurological disorders it can be maddeningly difficult to get a correct diagnosis and I'm glad to hear that you finally got the right one. None of them are good to have, but at least it's a relief to know what the problem is!
            Hi Bonnette,

            Personally, I'm not convinced I have HSP as I have symptoms that simply don't fit. My current neuro is of the opinion I may have a secondary, albeit unknown atm, disorder. My understanding is, if the Babinski Reflexes are normal, whatever you have it's not HSP, and as far as I'm concerned mine are normal. This was even pointed out by the *second in command* of the neuro who dx me, but he insisted I had HSP.

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              #21
              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.
              MS with cervical and thoracic cord lesions

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                #22
                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............

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                  #23
                  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.

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                    #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]

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                      #25
                      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.

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                        #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.
                        MS with cervical and thoracic cord lesions

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                          #27
                          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.

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                            #28
                            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.
                            MS with cervical and thoracic cord lesions

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                              #29
                              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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