Frustrated! No one knows for sure what my husband has.

For the last 3 years my husband has been told first that he had "left sides Parkinson's", then it was "PSP", then "CBD", those all from UNMC in Omaha, now we went to Mayo in Rochester and they are thinking "MSA".Now can you see why I'm frustrated. I'm thinking he might not have any of these. It might be something totally different. He has more testing scheduled at Mayo at the middle of May. I will keep you posted.

[Heady]

Hi Sluxford,

Keep strong. Whatever your husband has, he needs you. The one thing our good friend Jim has taught me is don't waste your energy on things you can't change. There are enough battles to fight, for the things you can do something about.

I really understand that you need to know exactly what is wrong with your husband, but one thing our Neuro said when we first went to him was, "by the time this finishes you will have had every possible neuro problem going and you will think we are totally incompetent, but we just can't tell"!!!

My husband has PSP, I don't think that will change, he has every symptom in the book! But even if it does change, his symptoms are not going to, so every thing that we are doing, will be the same regardless of which disease he has!

I know this is so difficult, but remember - one day at a time!!!

Lots of love

Heady

[Hidden]

Thank you Heady, your right, Jim always says, live one day at a time. I'm so grateful to all of my friends on this blog. I feel like I know everyone so personally. I'm so sorry to hear about Jim's wife. Thanks for your response and prayers. Suz

[dorothy-thompson]

Dear Sluxford

I agree entirely with Heady, it really is one day at a time.

The road of PSP maybe long, it is certainly going to be hard and difficult and at times frustrating. You will need all your energies and inner resources just to get through each day.

Yes, for your sake you probably do need to know your husband's exact condition so that you can understand what will happen at each stage.

In the end though as Heady says, it all comes down to the same thing, your husband will need all the loving care and attention you can give him.

You must also get time for yourself.

Take care, kind regards

Dorothy T

[carolinesimmons]

I can only imagine. My husband was diagnosed correctly on the first go. But on his death certificate, his primary care physician put "Parkinson's Disease." It is really infuriating! I'm sure you will give him the best care regardless of how the doctors try to label him.

[Hidden]

It's hard, my neuro said I may never find out what's wrong, in the meantime I am deteriorating. For me I able to get some financial support by the way of benefits because they go off symptoms rather then diagnosis but I do have to go through many hoops. Without diagnosis I am unable to get my pension as they will not take into account symptoms without a name as the trustee's are not able to see a prognosis. In the meantime my hubby is having to work more hours as we still have two grown up sons living with us. A diagnosis would help us. Although I appreciate what you are saying xx

[goldcap]

Sluxford-I understand. It took 4 years and four neurologists before we received a definitive diagnosis. It was not until he developed eye issues that the PSP diagnosis firmed up. I think there is always overlap and the symptoms present differently in each individual. Good luck at Mayo, and I hope you get clearer answerers.

Best JG

[jimandsharynp]

I wouldn't get too hung up on which disease it is. There are so many crossovers in these diseases that it is difficult. Jannet Edmunson who wrote the book "Finding Meaning With Charles" was told her husband had CBD but autopsy confirmed PSP. My wife just passed away from PSP (diagnosis) I will get a confirmation or change based on study of her brain at Mayo Clinic. My approach was to not worry about what disease it was but to spend time dealing with symptoms no matter the cause/disease. I also tried to take the approach that none of the diseases of the brain are a one-size-fits-all and every patient is different in symptoms to some extent. Example: Some patients act out in either anger or unexplained laughing. My beloved Sharyn had none of this type symptom. You can waste a lot of time that could be better spent on dealing with symptoms and telling your family member you love them. Ask yourself this: "If I knew for sure, beyond a doubt, the exact disease what would it change from what I'm doing?" God bless and stay strong. Jimbo

[jillannf6]

hi s

so sorry u have not yet got a dxs for ur husband

i agar fee with what the other s have said so far on the site

1 day at a time is good advice if you can = i find it difficult to do that i have to admit

but it is do as i say not as i d1

lol Jill

-)

[Buckeye7]

Been there...done that as they say. My mother in law went same route. First year and a half, Drs. Told her it was inner ear.problems. That specialisy said it was all in her head (psyvjological) .First neurologist...Cerebellar Ataxia...told my husband ..look out you're next...very hereditary, later changed to MSA, but said would never know for sure till she is on the table at autopsy...He had absolutely no bedside manner. New neuologist said PSP with some other symptoms present. Referred us to neurologist closer to home, between that time and new neurologist. Symptoms progressed with dramatic loss of cognitive symptoms. Finally CBGD. They are very certain, like Jim has said, all three of these horrific diseases are so similar. They can only be sure in autopsy. Regardless of which they have, end result and most treatment is the same. Symtom vary more in each individual regardless of label. I can understand the confusion. Take each day and stay here for caring and support. Be sure you stay as calm as possible. Your strength can be the best meficine there is. Some patients tend to feel guilty, when they see how it is taking its toll on you. Get help with care, don't shoulder it all yourself.The stress alone is too hard one one's body and mind. Take care of yourself and your husband

[dragonladynaps]

My husband who recently passed, was first diagnosed with Parkinson like symtoms, then Lewy Body then CBD. Closer to his time of death they said it was mixed dementias. Unfortunately even though I donated his body to science his neurologist could not get with them timely to autopsy his brain. So I will never know.

[Hidden]

My husband just got back from Mayo Clinic in Rochester. The docs their say he 100 0/0 has a Parkinsonism. They aren't for sure but they are saying he has MSAP. I haven't read to much about MSA. Does anyone on this blog have any insite on what is instored for us?