Als clinic on thursday

[Blackpool]

I had the ENG on June 4th and the results from the Doctor said strongly suspect MND.ALS
June 24th I had MRI of the brain and C-spine, my GP called us in to the office on July 4th and told us the "good news" that I didn't have MS,Cancer, Stroke, etc. they had detected a pinched nerve, I believe around C4 in the back of the neck. I asked my Doctor if MRI would show if I had Als he would not give me a staight answer and told me to ask the specialist at the ALS clinic. I have been reading this site for awhile and have been impressed with the sharing and commomsence of the members. Maybe you can give me some pointers on the questions I should ask of the specialists at the Als clinic and what to expect.I hope this is a good day for you.

 

[BarryG]

Hello Blackpool, I just wanted to say hello as I have been going to the University of Alberta ALS clinic since October of 2008 and have the greatest confidence in the doctors and the support staff there. I don't know what your symptoms are (I am bulbar onset) so I can't tell you what questions to ask but I do know that everyone at the clinic will answer any that you do ask. I have had a whole bunch of MRIs and from what I understand they will eliminate other things but will not diagnose ALS (ie they will not show ALS) but ask Dr. Kalra or Dr. Johnston when you see them as they will be able to tell you. I hope that all goes well for you.

Barry

 

[Blackpool]

Thank you Barry for the reply it is nice to hear positive remarks on the clinic I will be going to, it will be Dr Johnston that I will be seeing.Sometimes I have leg weakness, balance problems,breathing problems from the diagphram and what I call the jitters that drive me crazy it is in the tops of my legs and the midsection of my chest.I have read a little of Bulbar, is that the neck area?

 

[BarryG]

Hi Blackpool, all of the people at the clinic are very good and Wendy Johnson is very straight-talking, very professional and is a good listener. She will answer all of your questions and will not beat around the bush when you ask her specific questions. She was the one who pulled strings at the hospital for me to get my PEG feeding tube.

Bulbar onset ALS is where your mouth (tongue and lips) and throat are affected first. My symptoms started with slurred speech and swallowing problems and now I can't talk (or I should say that I can talk but nobody can understand me) and most of my nutrition is through the little tube that hangs out of my belly. So far my limb issues have been not that bad, I can still use my hands and legs but I do get tired easily and I feel wobbly when I walk.

If you meet the entire clinic team you will probably get a visit from Patricia with the ALS Society of Alberta and she will give you a very informative book about ALS that may help answer many of your questions. That is usually after you are formally diagnosed which I hope is not your case.

I am glad to see another Albertan on this forum as up until now there has only been Kevinski in Calgary and me. Don't get me wrong, I hope that you do not need to be here but if you do it will be nice to talk to someone who goes to the same clinic.

Just a correction on my earlier post, I said that I had been going to the clinic since October of 2008 when I should have said October of 2007. How time flies!

Good luck.

Barry

 

[Blackpool]

It is encouraging to know you have been a year long than you stated at first, I hope you have LOTS more years although I can't change the speed of time. I bet there are other Albertans online But being Canadian are too shy to contribute.I hope to be able to to be a supporter of Als and not a sufferer but will keep you updated if I get any diagnosed.Good luck to you also.

 

[Blackpool]

I have an update to this previous thread, do I start a new thread or just carry on here.

 

[lydia]

Hi Blackpool, it doesn't really matter, but you can post your update here. The thread is so recent it makes sense to continue it. Even if it was old, if you wanted to remind people of your story without repeating yourself, you could update it by posting again. It saves people the trouble of searching for your story, not that they mind!

Lydia