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

  1. #11
    I agree with the full spinal MRI with contrast. Next, have it read by an interventional radiologist. Barrows has the best diagnosis and treatment of AVM's with Dr Spetzler.

    I went without diagnosis for about 8 years. The sooner your diagnosis, the better possibility of outcomes.

    My best.
    In the dime stores and bus stations, people talk of situations, read books, repeat quotations, draw conclusions on the wall. ......Bob Dylan


  2. #12
    Quote Originally Posted by Bonnette View Post
    Actually, they can't - the lumbar puncture is used mainly to confirm suspicions based on clinical examination and MRI. With MS, the spinal fluid often (but not always) displays oligoclonal bands and high antibody ratios, but those are not exclusive to MS. And sometimes people with MS have normal lumbar puncture results. There aren't any specific tests for MS, it remains a diagnosis of exclusion. So it's important to see a neurologist with expertise in differential diagnosis.
    Here they give the people the diagnosis MS if they have plaque on the brain and sclerosis in the spinal fluid. It is the only way of getting it. I know people with MS who have no trouble at all, but they still have the diagnosis MS. Some people are like that, some people get paralyzed, quick or slow.

    But I know that things like this are different here and there. For me it seems like people with MS are getting better threatment here but people with SCI are getting better threatment in the US.
    TH 12, 43 years post

  3. #13
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    Quote Originally Posted by Bonnette View Post
    Actually, they can't - the lumbar puncture is used mainly to confirm suspicions based on clinical examination and MRI. With MS, the spinal fluid often (but not always) displays oligoclonal bands and high antibody ratios, but those are not exclusive to MS. And sometimes people with MS have normal lumbar puncture results. There aren't any specific tests for MS, it remains a diagnosis of exclusion. So it's important to see a neurologist with expertise in differential diagnosis.
    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.

  4. #14
    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!

  5. #15
    Senior Member wheeliecoach's Avatar
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    Quote Originally Posted by marycsm77 View Post
    this is ridiculous that you have gone 4 years, from walking to wheelchair with no dx. that is unacceptable. There must be one decent md somewhere that takes your insurance, what the hell is wrong with these people.

    That is exactly what happened to me as well. I am guessing this happens more than what we know...it is extremely frustrating and still angers me.
    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

  6. #16
    Senior Member wheeliecoach's Avatar
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    Quote 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

  7. #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.

  8. #18
    Quote 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.

    Quote 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.

  9. #19
    Quote 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.

  10. #20
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    Quote 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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