Has anyone been recommended to do a lumbar puncture and use advanced analysis of the fluid to improve/modify/change the diagnostic?
It seems that neurologists are still in search of better diagnostic tools. Easy to understand when we see the incredible number of false diagnostics between Parkinson and PSP! But my neurologist told me it was not just between these 2 options. Brain scans of different types do not bring enough information to do a good diagnostic. We are still using the techniques of 50 years ago, ie walk, body balancing, backward movement, eyes movement etc...
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loustalet
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My husband went to the doctor in May 2010 and was diagnosed with PSP at the beginning of September 2010. The local hospital scan didn't show anything unusual so he was sent to Kings in London. When we went to the local neurologist for the results, he had my list of 25 symptoms/changes I had noticed and given to our GP. Although he said nothing can be conclusive until the brain is examined after death, he was sure it was PSP as the main symptom that is different from Parkinson's is the lack of eye movement. I had a job getting my husband to the doctor as he insisted there was nothing wrong with him. Had I taken him a few years earlier when I first noticed changes, diagnosis would probably have been Parkinson's as his eyes seemed OK. It was when he started staring and not making eye contact that I insisted he went to the GP or I would call him to visit us.
There are better scanners in some places than others and we are grateful to our GP for investigating further when the first results came back, but as I said, I think it was my husband's refusal to see a doctor for so long that made the diagnosis easier.
George had a lumbar puncture last year and a brain scan, we were told he definitely had PSP, I thought it would be more painfull but they did it on his hospital bed he was fine, even after he was ok x
My guy had a lumbar puncture early on to rule out MS and some other named things, and it was in the end rather useless, as the neurologist admitted it could confirm MS, but that a negative result would not be conclusive. (He said that it could detect syphillis, as which point my guy said it better not be that, or, looking at me, he'd need a ride home!). It was the later brain scan that confirmed the psp diagnosis that we had been at that point been given based on the gait, balance and fixed gaze. I would be very interested to know what they might be hoping to learn from a puncture at this stage.
I should say that although he recovered quickly, the puncture was not without effect. It knocked him back a bit, and he was pretty healthy at that point. I wouldn't do it now without a solid hope that it might be beneficial.
Hi there, we asked my brothers neurologist about lumbar puncture, he really did not say much just that there has not been enough research as PSP is so rare there could be complications with that procedure, and he would not risk it, in his words really nothing works, the PSP will continue to progress, not very great news, gosh I hope they find a cure soon. Take care. Nettie
My dad had 2 lumbar punctures (LP), to check for NPH (normal pressure hydrocephalus) - it's a condition that has the same indications as dementia - this was before the PSP diagnosis - both times, it brought this stage down - so if the PSP is confirmed, I don't think an LP is good since surgery/anesthesia/hospitalization can cause a stage-down
LP was also suggested to us to give more info on CBD thro spinal fluid. I understand it CAN step up the disease and it is not an easy or pleasant procedure. Because of possible side effects, and also because my man had very small gaps between his lumbar spine, it was not done. He had several days to think about large needles and was obviously worried, so wecwere both relieved when neurologist decided not to do procedure.
Most of the current clinical trials for PSP in the USA require you to agree to both MRI's and Lumbar Punctures. They often want to do them at the beginning of the trial and then once or twice during/after the trial. Supposedly the spinal fluid can indicate an abnormal buildup of Tau, which is believed to be the main cause of PSP in patients. If there is a reduction in subsequent draws, then it would indicate their drug is effective.
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