Hi from Montreal

[Comoguy]

Hi there folks.

I've been lurking around here for about two weeks and decided it's about time to say hello. It is a comfort to see this forum and find others who are facing similar challenges.

My neurologist has concluded that I have EMG readings that are "suggestive of ALS". This is after several years of MRI's, etc trying to get to the bottom of problems I was having. They got worse last Christmas with increasing difficulty keeping my balance and walking. I now use a cane to walk and am losing strength in my legs. My results have been checked by another neurologist who agreed with the conclusions and I am going to see an ALS specialist in three weeks to try and make a conclusive diagnosis for or against it being ALS. So just treading water and waiting at the moment but still trying to read up a much as I can. I'm thankful you are here and open to sharing and caring for one another.

Cheers,
Stephen

 

[MaxEidswick]

>I am going to see an ALS specialist in three weeks to try and make a conclusive diagnosis for or against it being ALS.

good -- don't trust any of the non-specific ALS MND neuros. check back then

 

[GregK]

Welcome Stephen. Sorry to see you here.

 

[LoveMyKids]

Hey, Stephen. Sorry to hear about your health issues. I hope that you find this forum as helpful as I have.

 

[davbo49]

lets hope there wrong. you don't want to be here. but if you know where to come to.

 

[Janie H]

Hope you don't have to be here.

Janie

 

[gooseberry]

Hi Comoguy, Welcome! I grew up in NY about an hour South of Montreal and spent many a weekend in Montreal. I miss it! Sorry you are here;however, this is a great group. Lots of knowledge, help, and support. Hope you don't need any of it, but if you do we are here for you.

 

[Comoguy]

Thank you all for your warm welcome to "the group no one wants to join..." A good sense of humour certainly can help!

Will let you know what happens on the 12th. Hoping for patience...NOW! ;-)

Cheers,
Stephen

 

[gooseberry]

Stay warm Stephen! Cold will make you feel worse and as Max always says.....dont fall!

 

[WillIHen]

hello there! looks like we're in the same boat! sorry to hear your health problems and i hope all will be well for you

 

[Comoguy]

Thanks again for the warm welcome. It is appreciated.

I went to see the ALS specialist yesterday and it was, to put it mildly, frustrating. Some EMG testing and then "get dressed and see the secretary for more tests". By the time I got out and saw the secretary the doctor was gone. No chance to sit down for two minutes and ask, "So?" No opinion one way or another, no hint of which way things appear to be going. Perhaps I was naive to think I might get that yesterday. A battery of blood tests were ordered and yet another spinal MRI. Here a public MRI takes at least 6 months so I will have to go private in January once my insurance allows me another one. It feels as if the specialist is treating me as someone who just walked in off the street and starting at square 1 all over again. Perhaps, in hindsight, it will all make sense but for now it is very discouraging to have not had just two minutes to sit down with the doctor and get some sense of where things stand. Instead I'm left trying to interpret the tea leaves of my experience yesterday and guess...

Thanks for letting me blow off steam!

Cheers,
Stephen

 

[LoveMyKids]

Stephen -

So sorry about the doctor visit. I know it is so frustrating and stressful. Sometimes the diagnosis process is a long, hard road. I know that when we are in the midst of uncertainty it is so hard, but try to find enjoyable things to fill your day. We are always here for you.

 

[MaxEidswick]

>and as Max always says.....dont fall!


#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax

ALS is about living, not dying!

 

[gooseberry]

Couldnt you ask for your office notes?

 

[Janie H]

Hi Stephen,
I had to wait 6 weeks for conformation and had to go on medication for anxiety, I am so sorry that you are going through this, you are in my prayers.

Janie