Have any of you had changes in EEG?? My husband still hasn't spoken, his vision is blurry, he has difficulty understanding me, and the doctor sent him for an EEG which cam back normal so he told me it's just psychological and go see a new psychiatrist.
I am exhausted. I have lost all hope. I feel the doctor just doesn't care at all. Mayo's psychiatrist said it wasn't psychiatric. Just needed to talk. Sorry.
This wasn't a sleep study. It took 30 minutes. I have read some research on the longer studies. When he took a sleep study three years ago he was waking 68 times per hour, and his sleep cycles were out of sink. He is using a C PAP and lately his events have been averaging 6.8 per hour, but that machine revs up so hard it wakes me.
I don't understand why he sent Eric for a regular EEG. Could it have shown a stroke? Or PSP?
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How frustrated you must be! My husband, (CBD), did not have the same symptoms but his EEGs were all relatively normal.
No need to be sorry at all. We all need to vent and maybe someone will relate to your description of symptoms. I assume they did a CAT scan and MRI. I would be searching for an answer also. Thanks for writing.
The doctors have never mentioned the hummingbird sign. I have never heard of a neuro- opthamologist. I will look into that. He has been complaining that his neck is unbearably achey on each side of his thyroid also. I can't afford to take him to anymore doctors who don't care.
I have be in a similar situation. Because my husbands disease has progressed rapidly, doctors found it unusual and were all reluctant to make a clear diagnosis . His movement specialist suggested ALL of his symptoms may be coming from depression. If you had seen the progression from the beginning and knew him, you would know that was ridiculous . Mayo said everything they saw fit into what they would expect to see in a patient with PSP. Thus, they made that diagnosis.
We are recently receiving some care from the Veterans Administration in the US and have seen a psychologist. She said he does probably have some depression, but it different then what she sees normally. She is sending us to a neuro- psychiatrist to see if meds may help .
Dan also did not have a true hummingbird sign. Also, his movement specialist felt a neuro- ophthalmologist was an option if we wanted a definitive answer regarding eye movement.
Dan seems to be physically capable of speaking. His voice is clear. When someone new asks him important questions he can usually manage to answer a couple with a yes or no answer. After that, he drifts off. Sometimes he will say Hi to someone etc. on average he says about 3 to 5 words a day. Sad
That is sad. I am so glad you got a diagnosis. You kind of know what to expect. But it's still shocking and heartbreaking. I am so sorry you are going through this. My heart goes out to you.
No answers to the EEG, but I can sure relate to doctors not knowing and not really being motivated to get to the bottom of what's going on! It's maddening.
Hi. My mom had normal mri. In fact all scans have been normal. No hummingbird sign. But she most definitely has PSP sadly. I think the results also depend on timing of illness and the person reporting on them. Just wish we knew more about this disease...just wish we could prevent or treat it. Sending strength and love. The two things we need most when caring for our loved ones. Xxx
Hello, I'm sorry for the incorrect medical assistance you've had. You should have MRI and better yet, dynamic PET with glucose. You must demand it!!
So, you can have a correct diagnosis of what type of PSP your husband has.
You do not need a neuroophthalmologist. Check with a good neurologist if he can receive Botox injections in the eyelid elevator muscle. This should be done every 3 months. There is an immediate improvement that lasts 1 month, more or less.
It happens that physicians do not know how to analyze the images. In the case of my sister, we have ask for a comparison between PET images in 2014 against 2018. The image department reported both as normal. But, particularly, the 2018 PET images were clearly asymmetric. A new report was requested and we are waiting for the results.
There is an assertion when you are at one of this machines. If you do not know what you are looking for, you will never find out any.
Besides, a phoniatric will help with the speech and also in the future, will help with excersises to improve deglution.
Besides we do not know yet, if my sister has a PSP-P or PSP-FG.
She is training 3 times a day, his walk to maintain her capacity of little shuffling steps.
No one wants to be confined to a wheel chair.
The big problem is the falling backward. We have installed bars all around the walls and she can walk with her hands grip to the bars.
We look for a neuro-psicologist to help her in driving the depression, impotence and the angst of this state....it is a hard battle.
I am so sorry for your sister and for all of you. Thank you for your advice and sharing your story. The nearest PSP center to us is 18 hours away, and there aren't ant PET scans available around here. But it's something I have begged for. The nurologist keeps saying it's all psychological. I am about ready for a road trip.
Having a confirmed diagnosis with images will allow an approximate prognosis and more calm to your mind. Although PSPs evolve in different ways, it will not be so surprising anymore.
Reading this forum is very instructive. Actually, they are like small brain storming sessions, from which we draw useful conclusions for the care of the sick and of the caregivers. Try to writedown in a pocket-note, a list of suggestion you can obtain from our dialogues. Try to convert these suggestion in actions, slowly. Step by step.
It is worth preparing a well organized trip.
Arrive with time -a day before- to the city where the PET, is installed.
Before that, it would be better to find a neurologist connected with the Images Department where the PET is installed, and to combine the visit with a neuro-psychiatrist, to adjust the medicacion for depression and anxiety, typical of all the PSP variants.
You will need at least two trips but, making an intensive use on smartphones you would found out a solution for only one trip.
Good luck
All my help from here, at the southern edge of South America!
Thank you. I have definitely benefited from all the information you all have posted. With the new guidelines for diagnosis, I don't know if my husband could get a probable diagnosis of Richardson Syndrome form of PSP. He was 35 at onset. Now 39. I believe Dementia w/Lewy bodies is next closest to his symptoms. I am debating on hospitals right now but it would take a team to transport him but even without a PET, he has all the classic symptoms of PSP and LBD.
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