Knowing or not knowing which is better

[Anastasia]

Hi all,
just thought I d throw this in and see what peoole think.
Ed was diagnosed in July 09, and we were told he had PBP.
Now his specialist is sitting on the fence and not prepared to say it is that and is happier to go with the general diagnoses of MND.
By all accounts the symptoms Ed first presented with such as speech problems, some balance issues,trouble with his jaw and facial ticks first thing in the morning usually,
seemed to varify the first diagnoses.
Why would the specialist decide to sit on the fence and is he perhaps really totally unsure?
The illness is still with us of course, but we have the feeling that perhaps knowing at least vaguely which parts of Eds body will next be affected,was a help.
Maybe we dont need to know,maybe its irrelevant.
What do people think?
Have others had similar experiences?
We d be happy to have your thoughts.
Cheers,Anastasia.

[sadiemae]

I think knowing is better. my husband was actually more depressed when he didnt know what was wrong with him, than after the dx of ALS.

[Zaphoon]

Not knowing is awfully frustrating. At least with knowing, you have an idea of what you are up against. When the disease has a name, you can better prepare yourself for battle and make necessary plans for the road ahead.

You have a better idea of what to expect, what lies ahead.

Zaphoon

[joelc]

I can deal with the "known” I don't deal well with the unknown. So for me it was a relief when I was told what I had.

[Anastasia]

Thank you for the responses. As I thought ,people prefer to know what to prepare for and I m sure the majority of us are like this in our lives so the same in our health matters.
Ed is taking an anti depressant now, but I get from him that he would deal better if he had the real facts .
He is booked for a test which hopefully will give more info and and relieve some of his anxieties.
Thanks again, Anastasia.

[sesl]

Anastasia,

From what I have gathered there are some differences in terminology between the USA and Australia. The term PBP in Australia seems to be reserved only for patients who present with bulbar symptoms but there is no effect on the other parts of the brain. As soon as other areas are affected they move to a more general term - ALS.

Both PBP and ALS here are considered types of MND. In the USA the term MND doesn't seem to be used as much.

In most cases patients with bulbar symptoms develop ALS. My mother is a good exampe of what they might find with your Partner. My mother has only bulbar symptoms - fatigue, speech and swallowing are affected, plus emotional lability. If her symptoms remained in these same areas then as I understand it that would be referred to by her doctors as PBP. However the electrical tests and nerve conduction tests showed that she has affected neurons in other parts of her brain. Even though she can't feel anything yet in her limbs or stomach or back, other parts of her body are affected and this shows up on those test results. In fact the MND doctor-guru in Sydney told her that until you lose 70% of your function you don't feel it.

So because Mum has lost function in those other areas (even though she doesn't feel anything herself) she is considered to have ALS (with bulbar onset), not PBP.

What is the benefit of knowing this? Well she can educate herself about support services that she doesnn't need right now, but she will need in the future, such as Occupational Therapy. There are disabled parking permits that she can apply for, there are implications for superannuation and other things . . . she can get organised and ready for the time when her limbs are not as strong as they are now and she can't get about so much.

This has already been important in making a decision about her eyesight - which has nothing to do with her MND. Deciding whether to have a particular treatment versus continuing to use glasses. The eye doctor pointed out that relying on glasses might not be such a good idea as putting them on and taking them off could become difficult in the future. If she had PBP it wouldn't be an issue, but knowing that she has ALS has altered the decision criteria.

I hope I haven't confused you even further.

sesl

[joelc]

Sesl, that is a very good explanation. Thank you.

[Blackpool]

Very interesting thank you for the explanation,it is always good to learn a new thing.