Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Maureen, Welcome the boat without a rudder, a car without a steering wheel or lost in the desert without a compass. It took many of us a varying number of years to get a dx. I had MS for ten years from some of the leading neuro's in the US - including one who co-authored a text book on dxing MS. But after ten years and eight MRI's, I had no sclera on my brain or brainstem. My PLS dx came from a neuro in one of the largest MS clinics in the US. I don't believe many neuros were dxing PLS much before the mid-90's. Up until then the only sure dx was with a brain autopsy. I considered that route to be a bit extreme, so like many others I just kept going to other neuros until I found one who recognized PLS. Just hang in there and keep taking whatever makes your symptoms easier for you to bear. That's about the only way to tolerate this maddening creeping (or galloping) crud. Vaughn in Tennessee How long did it take for you to be diagnosed Hi all I have stated that i have either HSP or PLS but i have been incorrect in saying that. 3 neurologists have only given me a diagnosis of Spastic Paraplegia with Startle Myoclonus which as i understand it, is not a diagnosis but symptoms of a disorder. The 4th neuro came up with HSP or PLS but he is stumped with me as i dont clearly fit in with either one. but he has said that it is more likely HSP as there are 23 different varieties. My symptoms began 9 years ago and saw my first neuro 7 years ago (who like Lana here, told me to see a physchiatrist). You would think that i would have a diagnosis by now. I am using a walker now outside the home and speech problems began 1.5 years ago but have been corrected by taking baclofen. So my question to the people here is, how long after symptoms began did you receive a firm diagnosis? and are there any people here, like me, who are still waiting to be diagnosed? thanks maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Welcome the boat without a rudder, a car without a steering wheel or lost in the desert without a compass. Hi Vaughn yes the above is what you feel like when you dont have a diagnosis. Interestinly, i too, had a tentative diagnosis of MS for many years but as like you, MRI's have all been clear. In fact all tests have shown nothing. I am perfectly normal according to them. it certainly is very cruddy but on the otherhand " no news is good news " . Maureen > Maureen, > > Welcome the boat without a rudder, a car without a steering wheel or lost in the desert without a compass. It took many of us a varying number of years to get a dx. I had MS for ten years from some of the leading neuro's in the US - including one who co-authored a text book on dxing MS. But after ten years and eight MRI's, I had no sclera on my brain or brainstem. My PLS dx came from a neuro in one of the largest MS clinics in the US. > > I don't believe many neuros were dxing PLS much before the mid-90's. Up until then the only sure dx was with a brain autopsy. I considered that route to be a bit extreme, so like many others I just kept going to other neuros until I found one who recognized PLS. > > Just hang in there and keep taking whatever makes your symptoms easier for you to bear. That's about the only way to tolerate this maddening creeping (or galloping) crud. > > Vaughn in Tennessee > How long did it take for you to be diagnosed > > > Hi all > > I have stated that i have either HSP or PLS but i have been incorrect > in saying that. 3 neurologists have only given me a diagnosis of > Spastic Paraplegia with Startle Myoclonus which as i understand it, is > not a diagnosis but symptoms of a disorder. The 4th neuro came up > with HSP or PLS but he is stumped with me as i dont clearly fit in > with either one. but he has said that it is more likely HSP as there > are 23 different varieties. My symptoms began 9 years ago and saw my > first neuro 7 years ago (who like Lana here, told me to see a > physchiatrist). You would think that i would have a diagnosis by now. > I am using a walker now outside the home and speech problems began > 1.5 years ago but have been corrected by taking baclofen. So my > question to the people here is, how long after symptoms began did you > receive a firm diagnosis? and are there any people here, like me, who > are still waiting to be diagnosed? > > thanks > > maureen > > > Quote Link to comment Share on other sites More sharing options...
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