New from Scotland

[Isabella Harley]

Hello People,
Isabella here! I just found you and I hope this is working right. I put my profile and msn details on. I don't know anyone here in Scotland who has PLS, there's not many off us! So say hello to me and then I'll know this is working. I'd love some contact with other PLS princes and princesses!:

 

[Jennifer51]

Welcome, but sorry you need to be here. I am in London, and have learnt a great deal from this forum. I started symptoms just over a year ago, and was DX very quickly with pseudo bulbar

 

[Isabella Harley]

Hi Jennifer

Thankyou for the reply, Not worked out this sight yet but trying. I've had problems since 1997 and have never found anyone or anywhere like this so hope I can get some information and make like minded friends. Cheesrs

 

[olly]

hi isabella

sorry you have to be here but glad you found us.
i only know of one women in wales besides us.
i have had umn desease 9yrs,since around 1999.
you will find so much support,info and friends here:grin:

 

[Isabella Harley]

thankyou

Hi Caroline,
Thanks for replying to my wee message. It's great to know there are others out there after all this time! I do hope things are ok for you at the moment and you're keeping steady. Still not sure how to work the site but God loves a tryer!
Cheers
Isabella

 

[Zaphoon]

Isabella,

Welcome to the forum. I lived in Scotland for a little over 3 years (1993-1996) while in the U.S. Navy. I lived in the town of Brechin while stationed at RAF Edzell.

I've just been told I have PLS by my 3rd neuro. It stinks! But, life goes on and I'm still going to participate.

I loved Scotland and found everything there to be very hardy (the people, their pets, the crops, etc...).

Enjoy your stay here!

Zaphoon

 

[Rodstew]

Welcome from Tennessee in the USA ! Sorry to hear you have to be here.
I have only been a member of this site a short time but have already found it very helpful. I am sure you will also.

 

[brendapals]

Isabella,
A big Kentucky welcome to you! You will find your way around here in no time at all I'm sure. I was diagnosed with bulbar onset ALS 6/3/08, still going strong!
Feel free to ask away, most everyone on here is more than willing to share their story,
take good care,
brenda

 

[Al]

hello Isabella and welcome from Canada. If you click in FAQ above and then general forum usage you'll be a pro in no time.

AL.

 

[Isabella Harley]

Helllo American Buddies!

Hello Zaphoon, Rod,Brenda and Al!
Thank you so so much for the responses, this is cool! I'm so glad I found this site. I'm new to computers so to have got this far is quite a feat. I wonder if any of you folk have had difficult experiences with their neurologists? Like "You're brain's just mis-behaving", "We don't like to give PLS as a diagnosis", "It's not such a bad thing", "Well we don't know much about that" etc etc...? All of which leaves me mad and confused! One will play it down and some look at me as though I'm about to expire at any moment! I don't go to the hospital now, don't see the point. I'd be intrested to know if anyone out there has had a similar experience with the medics?
I'm so happy to hear from people, wish we could all have a big party-be a bit hard to arrange a suitable location though! Happy day.
Isabella x

 

[Isabella Harley]

Hi Zaphoon,
I'm glad you liked bonny Scotland. We are indeed from hardy stock-just as well eh! I hope you are keeping on and like you say we never know what life's going to chuck at us but all we can do is fet on-denial works for me!

 

[Zaphoon]

Isabella,

The subject of neuros and their manners has been discussed a lot on this forum. My first neuro is a lady, very caring and compassionate. She took a good look at me, did a lot of testing (EMG, NCV, MRI and blood work) and came to the conclusion of suspected MND. I was the sent on to neuro #2 who has turned out to be a dismissive, blithering idiot. Neuro #3 agreed with neuro #1 and has come to the conclusion I have PLS (for now).

So much for my experience but you have to give the medical community credit. Some of these folk operate in clinic environment over here and see all sorts of people with imagined problems; some of whom have an overwhelming desire to be diagnosed with some insidious disease. Neuro #2 must have seen his fair share just prior to taking a look at me. He is still an idiot in my book.

I loved Scotland. I arrived January 3rd of 1993 and the fields were green as we flew over them to land. It snowed that evening and winds picked up to gusting at 100mph. The navy had put me up in what you would call a caravan (mobile home) upon my arrival and I thought for sure I was set to do a "Dorothy & Toto" kind of adventure and fly away in my temporary lodging. Quite a ride that night. 10 inches of snow on the ground the next day!

Fond memories of Scotland! Very scenic place, too!

I sympathize with you and your feelings of the medical community. Sometimes its just a matter of finding the right doctor.

You will find a lot of good company here.

Cheers!

Zaphoon

 

[Isabella Harley]

Hi Zaphoon,
Yes I suppose the docs do have a hard time with all the stuff they see and can't fix! I just find it very hard and confusing!
I'm glas you liked Scotland it certainly is very very snowy right now, so being in a caravan would not be good!
Cheers
Isabella

 

[etchick]

:|Hello! I just found this support group, too. I don't feel so alone with the strange and wonderful (lol) disease. I hope this will become an oulet for me to share my experiences and vent my frustrations. I have been officially diagnosed for 6 years. But now that I look back, I have always displayed shades of this disease. I am in no pain; however, it's very frustrating because I can't walk.
Please write back.

 

[Jennifer51]

Hi Isabella....it seems from one of your posts that you are not too happy with your neuros..I had the same experience..He said..I am really good at diagnosing, one of the best....well he may have diagnosed me quickly..but then I was paying through private insurance..but he has no bed side manner, and is useless in follow on. He has a dreadful reputation within the healthcare services locally. Might I suggest you contact the mnd assoc..I dont know if you have a separate one for scotland. In England they part fund mnd clinics and the support you get from them is fantastic, in my experience they REALLY care. So many things have been followed through by them with regard to all sorts of care. I would not be getting half the necessary attention without them.