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Bluenadski

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Joined
Sep 23, 2007
Messages
17
Reason
Loved one DX
Diagnosis
09/2007
Country
Sco
State
Lanarkshire
City
Glasgow
Hi there,

My mother has been diagnosed with PBP last Friday. She was in hospital for tests for 5 days. From what I can gather - from other sufferers - diagnosed generally takes much longer than this. She could have multi focal disorder (of the tongue - granted this is very rare)or hypoglossal Neuropathy from the symptoms she is showing - my main suspicions as she is experiencing pain in her neck and throat which is supposedly absent in pbp.

My question is - would you recommend a seeking a second opinion?

Thanks
xxx
 

Cornelia

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Sep 17, 2007
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Learn about ALS
Country
US
State
NC
City
Charlotte
Hi. It is always worthwhile to get a 2nd opinion. How much experience does your mother's neuro have with ALS. Your best bet from what I hear is to go to an ALS
clinic. I am in the process ob being diagnosed myself and it is a long process.
good luck to you and your mom. cornelia
 

Bluenadski

Member
Joined
Sep 23, 2007
Messages
17
Reason
Loved one DX
Diagnosis
09/2007
Country
Sco
State
Lanarkshire
City
Glasgow
Hi Cornelia,

I hope everything works out ok for you!

Well, I have no idea how much exp he has as he is not a resident doctor. He was placed there around 5 months ago.

I called the Scottish MND assoc and they revealed that the Chair of their board is a Neuro with loads of experience in MND - based at the same hospital as the other neuro.

I wondered if possibly the initial Neuro checked case notes with this other one - but my mothers doctor seem slighly offended by the suggestion she wanted to see another neuro for a second opinion. My mother was a little upset by this.
I feel furious if this is the case....
I dont give a monkeys about their offence at her questioning their professional integrity! She has the right to a second opinion. Stats revealed this year show MND is misdiagnosed in up to 8% of Scottish cases. Therefore it does pay to check!

Anyway - it looks like the new Neuro hasnt seen her case - so I'm holding out for him. Called today - awaiting a call back.

Thanks
xxx :)
 

Bluenadski

Member
Joined
Sep 23, 2007
Messages
17
Reason
Loved one DX
Diagnosis
09/2007
Country
Sco
State
Lanarkshire
City
Glasgow
Well this really sux!

Just been told my mother will go under a waiting list as a second opinion is not a priority!
The time line is approx 3 months to 3 years so basically my thinking is f*ck that!

She has family in Vienna so I am going to send her there for a second diagnosed!

This shi*thole of a country believes in first diagnosed and no room for mistake at all! Its utterly bizarre seeing stats discuss 8% of MND cases in Scotland are misdiagnosed!

Going to take mum to Vienna to prof in MND...

She is at the point where she will try anything............ Now contemplating Stem cell in China. Not considering dct Huang incase u worry! Safe (Well as much as it can be - and not spinal cell integration - I'm not that stupid) She's been diagnosed with PBP (Progressive not Pseudo)


Am absolutely gutted this has happened to my mother in the first place. Literally just bought her place in the UK and bought house in her homeland of Bosnia l,ast year!
She was contemplating, on her retirement, 6 months home and 6 months here next year earlier ..... now she has no choice to stay here! Too afraid of staying in Bos with primative treatments.

Am utterly dazed and contantly feel as if someone has punched me square in my gut!
Honestly thought she had pulled a tongue muscle or trapped a nerve as she's contantly complaining of pain in her tongue and neck! From what I can glean - this is supposed to be a pain free condition!

Feel as though I'm completely vulnerable as I'm totally unprepared for this diagnosed. :confused:
 

Bluenadski

Member
Joined
Sep 23, 2007
Messages
17
Reason
Loved one DX
Diagnosis
09/2007
Country
Sco
State
Lanarkshire
City
Glasgow
Well this really sux!

Just been told my mother will go under a waiting list as a second opinion is not a priority!
The time line is approx 3 months to 3 years so basically my thinking is f*ck that!

She has family in Vienna so I am going to send her there for a second diagnosed!

This shi*thole of a country believes in first diagnosed and no room for mistake at all! Its utterly bizarre seeing stats discuss 8% of MND cases in Scotland are misdiagnosed!

Going to take mum to Vienna to prof in MND...

She is at the point where she will try anything............ Now contemplating Stem cell in China. Not considering dct Huang incase u worry! Safe (Well as much as it can be - and not spinal cell integration - I'm not that stupid) She's been diagnosed with PBP (Progressive not Pseudo)


Am absolutely gutted this has happened to my mother in the first place. Literally just bought her place in the UK and bought house in her homeland of Bosnia l,ast year!
She was contemplating, on her retirement, 6 months home and 6 months here next year earlier ..... now she has no choice to stay here! Too afraid of staying in Bos with primative treatments.

Am utterly dazed and contantly feel as if someone has punched me square in my gut!
Honestly thought she had pulled a tongue muscle or trapped a nerve as she's contantly complaining of pain in her tongue and neck! From what I can glean - this is supposed to be a pain free condition!

Feel as though I'm completely vulnerable as I'm totally unprepared for this diagnosed. :confused:


Can Anyone offer any advice how to move forward?
I'm at a complete loss! Totally and uttely stunned!
 
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