PSP Association
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Second opinion appointment this afternoon

I've been trying to change my user name and instead of changing to what I want I get a worst version of what I started with.

It's 4 months since I got a diagnosis of PSP from an ophthalmologist. This afternoon I see a specialist in the Movement Disorders department of a major hospital. I am hoping I will get a definitive answer. My collection of symptoms started 9 years ago. Will my quest for a diagnosis end today?

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I wish u the best. I am not sure if the quest will continue.. with my husband each time I notice a new symptom i search again and it has been about 4 years. Since symptoms are what neuros go by, there is definitely subjectivity playing a part. I would love to know how the ophthalmologist came to his decision can you elaborate on that

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Her decision was based mostly on eye movement, mainly remarkable inability to look up.

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That is most definitely a PSP symptom.

However I am a little concerned. There is something called differential diagnosis. To make a diagnosis the Dr should be looking at all symptoms and matching them to a diagnostic schedule. So a given illness may present with 'this' symptom, but never with 'that' symptom. Brain scans are very helpful in diagnosing PSP I believe.

Gait is usually an early symptom too.

Best of luck I hope you get better clarity from the Doctor.

Kevin

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Super specialist said not PSP, nothing neurological. Great news, but no diagnosis.

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Wonderful news!

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Trying to see if my changed user name comes out a mess again before I try to change it and it says I can't change it again.

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Hello BH-BB

I want to say hello I am ssdw1958 and I want to say I hope and pray you get a good diagnosis.

I also had to go to a totally different doctor and office to find out what was going on with my body. After a good five years of telling my doctor there is something wrong with me I had all the signs of MS. I finally looked it up on google and I had a medical book from believe it or not Readers Digest, I either had MS or Lyme disease not that I wanted anything but I had something to go in and say I either have Lyme disease or MS and they said to me don't jump to conclusions but I finally went and had an MRI and spinal tap spinal and I finally found out that I have that MS. I left that doctor asap.

On a lighter note I tried to change my password for a site and I don't know what I did but I changed the language to Chinese so I was looking at lines going every which way. I wish I could help you with changing your username, what I did was kept on changing it and it worked.

Good luck in all that you do. 👍

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I think I'm now Barbara-41, birth year not age.

I'm trying to get up the energy to get ready for my appointment.

I've been trying to get a diagnosis for 9 years. A colonoscopy started my downhill slide.

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What did you notice after your colonoscopy

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There were actually two colonoscopies three months apart. Before the first I was doing 10,000 steps a day and getting my weight down. After the first I was weak and could barely move for four days. I felt this was caused by Versed: the doctor thought it was the pain med. During the second colonoscopy the doctor did find another polyp that had been hidden behind one the ones he had removed in the first colonoscopy. Right after I arrived home after the second colonoscopy I began bleeding profusely from a small triangular flap far back on my tongue. Pressure stopped the bleeding. The flap remained standing for a week. I had not had an upper endoscopy. I was never told of anything happening that would have required any instrument to be placed in my mouth. I never regained the strength to be on my feet for more than a few minutes after this.

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At this point in my life I assume incompetence on the part of medical people until proven otherwise. Keep looking for someone who can give you an answer.

After Larry had seen a neurologist for a year and a half at one hospital, having assorted tests done, I took all the results down the street to another hospital and got an answer at the first meeting with the new neurologist.

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Thanks ,Jeff. I am just starting on a WHERE TO NOW? The doctor I saw yesterday is head of a Movement Disorder clinic at a major hospital. For now I will accept his not PSP, not neurological words and look back at earlier diagnoses—Ehlers Danlos, MG, Sjogren's, PMR, inflammatory polyarthropathy and myopathy and a long list of spinal and eye problems— for any developments that might help me.

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Hello Barbara-41.

I hope the Head of the Movement Disorder clinic you consulted is right, that you don't have PSP. It's bad in so many ways.

For those who suspect PSP, I would make sure that the health professionel they're consulting is using the new diagnostic criteria for PSP (consensus-based and evidence-based).

The revised criteria were published in May 2017 in Movement Disorders, the official Journal of the International Parkinson and Movement Disorder Society.

ncbi.nlm.nih.gov/pubmed/284...

Clinical diagnosis of progressive supranuclear palsy: The movement disorder society criteria.

I had to pay to get the complete article but found it instructive even if I don't understand everything.

In this article, there is a lot more information about what to look to reject PSP (mandatory exclusion criteria, or context-dependent exclusion criteria).

Finally, the abstract provides a lot of names (authors/collaborators) that may be consulted or that may offer references.

----------------------------------

Between 1996 to 2016, the criteria used to diagnose PSP were called the NINDS-SPSP criteria.

NINDS-SPSP stands for National Institute of Neurological Disorders and Stroke and the Society for PSP.

All the best.

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Thanks. I'm always frustrated by articles that require you to a subscriber with an MD. Some don't even tell you the cost of subscribing, just ask for your credentials. At the moment I'm wiped out afteir four months of pursuing info on PSP while waiting for yesterday's appt. I'll come back to it if I don't find another, maybe even a treatable, possibility to look into.

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What area of country are u in

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Boston

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I think his answer is correct. If you had PSP for 9 years you would be in very bad shape by now. Immobile most likely.

Type all your symptoms into google and see what pops out. It could be any number of things.

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