I am 70 years old and have an identicle twin sister. We both have a history of heart disease - hers being much more serious. She had quintupple bypass in 2001 and did well. I have had 3 angioplasties, and am doing quite well. My sister has had 2 more heart surgeries since then, and now has a mechanical mitral valve (Apr.2009) and it really improved her heart function.
However, she developed other problems and was eventually diagnosed with Parkinson’s disease early in 2010. Then suddenly her specialist told her she did not have Parkinson’s disease and took her off her medication. In July she went to her GP and demanded to know why she was feeling worse all the time, and was told that the GP had just received a letter from the specialist saying that she [i]did[i] have Parkinson’s after all. They put her back on the medication but it didn’t seem to do anything for her.
Later she was told by the same specialist that she has Progressive Supranuclear Pulsy (PSP) Sometimes the symptoms can be confused with Parkinson’s. This specialist has changed her mind back and forth 4 times. Just before Christmas she told my sister once again that she doesn’t think she has PSP, and then yesterday, Dec. 31st, my sister went back to her GP and was told she received another letter from the specialist who now says that she does in fact have PSP [i]and[i]Parkinson’s!
It sounds almost like a cruel joke doesn’t it. I have done a lot of reading on PSP and unfortunately I believe that is what she has. She is falling more all the time, even while using a walker; her speech becomes slurred, her motorskills are very slow and difficult. On November 14th she fell and cut her head on the hearth and required 9 stitches. Then 2 days later she fell and cracked 2 ribs. She was hospitalized and just went home on Dec. 24th.
It is a heartbreaking story because her husband was also in hospital with a broken hip and released a week before her, and they have had to go into an assisted living, but self contained, apartment. Their home that they have had for 46 years is now on the market because they could not go back there alone.
I live in Alberta, Canada, and they live in Ontario, so we are a long ways apart. I am travelling there this month to visit and it will be another heatbreaking goodbye when I leave, even though my husband and I will be driving there in late Spring.
Please, can someone tell me if they are familiar with this disease and what is the very best test to verify it.
I’m sorry this is such a long post, but I’m trying to give some background….and there is a lot more medical history that might or might not be important. I will wait for some answers before I post more.
Thank you very much.
Dr. Joshua’s Answer:
Regarding your actual question, there is no specific laboratory or other test to diagnose progressive supranuclear palsy (PSP). The diagnosis is clinical, meaning that progressive supranuclear palsy diagnosis is based on symptoms and physical examination, combined with the careful exclusion of other diseases causing similar symptoms.
Usually a comprehensive neuro workup is done, including lab tests, brain MRI, CSF, and so on. When nothing else is found and the clinical picture matches that of PSP, the diagnosis can be made. Consultation with a neuro-ophthalmologist should be done.
Treatment is difficult and is based on whatever seems to improve the symptoms for any given individual. There is some indication from a single randomized trial that coenzyme Q10 supplements may alleviate the symptoms, so maybe your sister might consider trying that. I recommend discussing any self-treatment with her neurologist.
References:
Stamelou M, Reuss A, Pilatus U, Magerkurth J, Niklowitz P, Eggert KM, et al. Short-term effects of coenzyme Q10 in progressive supranuclear palsy: a randomized, placebo-controlled trial. Mov Disord. May 15 2008;23(7):942-9.
Eric R Eggenberger, DO, MS, FAAN and Zeba F Vanek, MD, MBBS, DCN: Progressive Supranuclear Palsy
http://emedicine.medscape.com/article/1151430-overview
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