More News from Mayo Clinic

[Karynleitner]

My husband recently had his second visit to Mayo. He had a PET scan , MRI and lumbar puncture. After the tests, we met with the doctor (A world renown neurologist very familiar with PSP) . He reviewed the test with us showing a lighting up of the frontal lobe on the PET scan and a slightly smaller mid brain on the MRI. He said this correlated with the diagnosis of PSP. Results from the lumbar puncture were not all in, but it showed his white blood count was good, which meant there was unlikely any infection or problem. Clinical diagnosis ( after 6 neurologists) PSP.

In the meantime Dan’s disease continues to worsen. Cannot walk, barely pivit due to rigidity, cannot hold up his neck, voice is clear yet speaks no more then 10 words a day, doubly incontinent, tired and weak, right arm and leg rigid. He does not even move in bed, where we put him is where he stay, if we speak to him he just looks at us with a blank stare,, he will shake his hand to answer. Yet, he is there somewhere. Sometimes I can see he does know what’s going on. Keep in mind, this all started less then 2 years ago. This amount of rapid deterioration is the reason doctors have been confused.

New call from Mayo. Dans lumbar puncture shows a protein level of 196. Almost 4 times the norm. His immonglobulin levels are also off. They are continuing to test the fluid. They feel he may have an inflammatory situation in his brain that can be treated with immunotherapy . The results of the treatment will help tell which symptoms are being caused by the inflammation . He may also have PSP that is being exasperated by an inflamed brain, or may not have PSP at all. If your PSP is progressing at an alarming rate, a lumbar puncture may be something to consider. However, this condition is a rare long shot. We do not go back to Mayo until next month.

[Hidden]

Larry went through various tests over a year and a half before I took all the information elsewhere and got a diagnosis of Parkinsonism which got refined to PSP.

Dan may well have an inflammation on top of the PSP. If you are lucky it will prove to be only an inflammation causing the symptoms and is treatable. I wish you well.

[Karynleitner in reply to Hidden]

Thanks. Keep in mind this is very rare, but PSP is so hard to diagnose for certain. Dans condition has deteriorated so rapidly that they thought he may have an infection . ‘It was a long shot but due to the extremely rapid decline they wanted to be sure. What they found was not expected and highly unusual . He may well also have PSP. He has tests that showed that there was a problem with dopamine also.

Thanks for your caring. Response .

[Hidden in reply to Karynleitner]

My first comment to you was that it didn’t sound like PSP. Of course PSP follows no course. It is different for everyone. Dan may well have PSP plus something else. Hope Mayo can help some how.

[Karynleitner in reply to Hidden]

Can you tell me what did not seem like PSP to you. Obviously, you are Correct. His one doctor also felt something was different then PSP, but never said what. Thanks for your insight.

Karyn

[Hidden in reply to Karynleitner]

The rapidness of his decline and stiffness stood out to me. I’m no expert. I only know what I see in Larry. One of the reason I read the post here is to get ideas of what to look out for. Everyone seems to present differently. There are overlaps of symptoms of other neurological conditions.

[Karynleitner in reply to Hidden]

Thanks, yes the rapidness of decline has been intense. Doctors have been reluctant to address that . Mayo did feel the decline was very fast which is why they felt it prudent to do more testing. They explained the rigidity as a symptom of the Parkinson like part of the disease.

I feel that sometimes this site has more knowledge then some of the docs who have limited experience with PSP.

Good luck to you.

Karyn

[enjoysalud]

Thank you for taking the time to post the Mayo visit/tests. Information, no matter the results, is a great help.

[LuisRodicioRodicio]

Your comments are very useful. Thank you for sharing them.

Hugs and luck.

Luis

[NanBabs]

I wondered if P had a condition called NPH (Normal Pressure Hydrocephalus) before final diagnosis of PSP but usually a lumbar puncture eases the situation immediately with NPH and P`s neurologist said lumbar punctures exacerbate the symptoms of PSP so he did not recommend it.

Good luck.

xx

[Karynleitner]

I had Dan at a doctor to rule out NPH. He had many of the symptoms , but his MRI showed ventricles were too clear. The NPH specialists said his gait and stance were that of someone with PSP, not NPH and she ruled that out.

Dan had a scan which showed he has some trouble using dopamine , so there is something Parkinsonian going on. Even when they took the lumbar fluid they thought it would be ok because of the good white count. I think this is very rare, but with such a large portion of PSP patients being misdiagnosed, I thought it was worse mentioning.

Dans condition is bad

Thanks for your reply.

[CBP1]

Thank you for keeping us up to date. Your husband's progression reminds me so much of my own husband's. His disease progressed very quickly as well. He was able to perform surgeries and delivery babies until late July 2014. He died on Nov. 6,2017.

I am so sorry that your husband has to endure this ugly disease.

[Karynleitner in reply to CBP1]

Thanks for your response. I am So sorry to hear your husband has died,. It is sad that such a wonderful Hard working man did not have years to enjoy retirement and family.

Dan continues to deteriorate. We were just making plans to put a hospital bed in the living room, and now more uncertainty from Mayo.

When you feel able, would you mind sharing the course of his disease as well as what actually took his life. This experience has taken a toll on all of us. I hope you are able to find peace in the fact that he is no longer struggling with PSP. Thanks again. I am truly sorry for your loss

Karyn

[CBP1 in reply to Karynleitner]

Thank you, Karyn.

Would you be comfortable emailing me at [e-mail]? I will email you back with a more detailed course of his disease.

He developed difficulty with swallowing approximately one week prior to his death. We tried a thickening agent without success. He had several episodes of choking on his liquids. He then got a fever approximately 5 days before he passed away, that gradually became very high. One of his biggest fears was having trouble with swallowing and choking. He was adament that he did not want antibiotics or other medical care if he developed aspiration pneumonia.

He died without pain.He was alert up until a few hours before his death. He was at home, surrounded by his family. We had an opportunity to tell him how much we loved him and how much we were going to miss him. I don't know why my son asked this, but he asked his dad, "are you happy?" George responded, "very happy."

[Karynleitner in reply to CBP1]

Thanks SO much. There are so many components to this disease. I would be very happy to e-mail you. Thanks again.

Karyn

[rriddle]

Did they rule out Creutzfeldt-Jacob Disease (CJD)?

[Hidden]

Things get talked about here that would never come up in a doctor’s office. There are so many variables and overlaps with these diseases. Reading the posts on this site gives me ideas of what to look out for.