Newly diagnosed - And in Shock

[bear1973]

Hello all,

So glad this forum exists.
I started noticing a weaker left leg about a year and a half ago - thought nothing of it. Last Feb. I was on vacation in Florida and walked everywhere, felt fine. Last May, walked about 2 km's to pick up my car and noticed a limp - then realized I couldn't stand on my toes anymore. Since then - from May 2014 to know, left leg has become progressively weaker although can still walk, just with a limp. Leg is very tired after walking a 500m. Had an MRI done last fall which showed a bulging disc - it was thought that a nerve was being pinched. But saw a neurologist today who did testing on my left leg, right leg, and left arm. Neuro said the muscles were definitely not working right on left leg, were better on right leg although still not working right, and in left arm there was some disturbance as well. Electro testing (...forget name of the test) and also "listened" to the muscles amplified - forgot the name of this test as well.

Having said that he ruled out MS (no vision/bowel problems) and said was ALS. In shock now. 41 years old. I just don't know what to think - he said I have about 20 years give or take although really didn't know.

Very anxious and depressed now. Trying not to think of my future although hard not to. Do you guys think a second opinion is needed? He spent about 90 min. with me and was first appointment.

Any feedback appreciated. Thanks.

 

[swalker]

Welcome, and sorry to have to meet you here. It sounds to me like a second opinion from an ALS specialist is very much in order.

Your experience leading to a diagnosis sounds surprisingly brief.

ALS is typically a diagnosis of elimination. They run a bunch of tests, typically over a pretty long period of time, and eliminate a lot of causes of muscle weakness.

So, while your pattern of weakness is concerning, there are many other things that could cause that pattern of weakness.

Even if the doctor making the diagnosis was an ALS specialist, I would still recommend a second (and even third) opinion.

Steve

 

[Atsugi]

If I thought I might have a terminal illness, I'd get the second opinion from the Mayo Clinic.

 

[Vincent]

Howdy neighbor, sorry to meet you. Get in touch with the ALS clinic at Sunnybrook asap. I see Dr Izenburg. Very thorough, specializes in motor neuron diseases, and oddly enough has wonderful bedside manner. If you want to talk. personal message me on this forum and we can arrange to meet at Timmy's or something. It is a shock, but having support makes things easier.
Vincent

 

[lgelb]

Vincent is right -- connect w/ his doc for another evaluation and if the worst is true, you have a clinic for care. You always want a 2nd opinion for a dz of this magnitude. But it is possible to get a diagnosis correct on the first visit, so hope for the best, prepare for the worst and best of luck in chapter 2.

 

[Nikki J]

Sorry to hear agree with Vincent and Laurie do get copies of all your tests to take with you. It sounds like you had an EMG ? With needles? That is usually the way we get diagnosed.
Please ask us any question and or use the search function. Lots of info here

 

[bear1973]

Hello Vincent, and very nice to meet you as well. Still quite rough today - didn't sleep well last night. Not sure how to personally msg you although would love to meet up. Please contact me personally if you can. Thanks so much.

Hi Nikki..... Yes - it was an EMG using needles. I would like to get a second opinion based on what was said here. The neurologist yesterday said he basically couldn't explain the weakness any other way other than to conclude it was ALS. He saw no symptoms of MS and said the MRI was relatively normal. For me, it's my mental health that is mostly suffering today - tons of anxiety and some depression. Feeling lonely, sad - thinking about the future. Trying not to though. I will keep in touch.

 

[anderkling]

Welcome to the forum from one Canadian to another. I'm sorry for all you're going through. We all here understand. The time around diagnosis is one of uncertainty, confusion, hoping it isn't true, deep grief and a wide range of emotions. It takes time to process it all, to come to terms. But be encouraged. You are not alone; there is a community of others going through the same thing. We try to help each other as best we can. There is life after diagnosis. There are joyful experiences to be had and places to go and people to see and love.
-Charlene

 

[bear1973]

Thank you Nikki for passing along the information.
Still in a bit of shock although have had some times where I'm not thinking about it quite as much and am able to concentrate. A challenge though. The next step is to get a second opinion and go from there. Thank you all for the words of encouragement.

 

[canmark]

bear1973, I see Dr Zinman at Sunnybrook and he is very experienced, as well.

Sunnybrook also hosts an ALS support group, which is run by people with ALS (not by hospital staff). You can ask to be put on the email list to receive notifications about meetings. It can be helpful to see/meet/talk to other people with ALS. The community on this board, various Facebook groups, and PatientsLikeMe can also be helpful.

 

[bear1973]

thank you, Canmark - plan to attend a group at the end of the month close to my area.

 

[texastracy]

Sorry you have be here, but glad you found us.

Please get a second opinion. This is a disease that has specialists that can zero in on the correct diagnosis. The symptoms can mimic other diseases. Even my neurologist who runs the MDA MS clinic sent me to a MDA ALS clinic to be sure of the diagnosis.

 

[bear1973]

Thank you, Texastracy.
Good days, not-so-good days, good hours, not-so-good hours.

I saw this post today on Facebook by Stephen Hawking which helps:

"My advice to other disabled people would be, concentrate on things your disability doesn't prevent you doing well, and don't regret the things it interferes with. Don't be disabled in spirit, as well as physically"

 

[gooseberry]

With als, we have found we can get my husband out to do most of the things he has always enjoyed doing. We have to make adjustments and things take a little lo ger but he isn't limited by what he can do if we plan well.

 

[skipper66]

Did you type that right? He told you have 20 years left with ALS? Boy, a whole hell of alot of PALS would be thrilled hearing that one.