Sille's thread: Can we talk symptoms?
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ShiftKicker
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Sille-
You are in a centre for medical excellence in Calgary. It sounds like your doctor is both communicative and interested in searching every last avenue. As Nikki states, I saw a psychiatrist (referred when the gp thought I was depressed) and he helped me deal with the wait. In fact, he is STILL helping me deal with things and has helped me navigate the world of complex chronic disease. Anxiety relief is important, as symptoms can be amplified with unchecked anxiety. If you can find one for your doc to refer you to, make sure they deal with folks with complex/chronic disease. They know the system and the frustrations that come along with the sometimes long waits and issues with limited resources.
You are correct in that PLS takes a long time to diagnose, but your referral to the ALS clinic means you will have a confirmation or elimination of "motor neuron disease" as a diagnosis when you get there. Have you received a date for that appointment?
You are in a centre for medical excellence in Calgary. It sounds like your doctor is both communicative and interested in searching every last avenue. As Nikki states, I saw a psychiatrist (referred when the gp thought I was depressed) and he helped me deal with the wait. In fact, he is STILL helping me deal with things and has helped me navigate the world of complex chronic disease. Anxiety relief is important, as symptoms can be amplified with unchecked anxiety. If you can find one for your doc to refer you to, make sure they deal with folks with complex/chronic disease. They know the system and the frustrations that come along with the sometimes long waits and issues with limited resources.
You are correct in that PLS takes a long time to diagnose, but your referral to the ALS clinic means you will have a confirmation or elimination of "motor neuron disease" as a diagnosis when you get there. Have you received a date for that appointment?
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Sille,
My husband got a referral to a psychiatrist from his Neuro, Dr. Korngut, at the ALS clinic. I can get you his name if you'd like. He deals with individuals battling terminal and chronic diseases. Please let me know if you would like his name.
My husband got a referral to a psychiatrist from his Neuro, Dr. Korngut, at the ALS clinic. I can get you his name if you'd like. He deals with individuals battling terminal and chronic diseases. Please let me know if you would like his name.
Sille
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Thanks ShiftKicker and Bestfriend,
I do plan on seeing a psychiatrist so any recommendations would be great.
My current Neurologist said he would set up the referral to the ASL clinic though I have not received an appointment phone call. Hopefully soon a date will be set and then I can plan accordingly.
I do plan on seeing a psychiatrist so any recommendations would be great.
My current Neurologist said he would set up the referral to the ASL clinic though I have not received an appointment phone call. Hopefully soon a date will be set and then I can plan accordingly.
Thestratman56
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I am in a similar situation as you. I’ve been told I have PLS with the possibility that it’s ALS. Going on 2 years now going to the ALS clinic and they are still not sure. I’ve been exactly we’re you are now. Wanting answers to what’s going on with me. Depression and anxiety setting in from fearing the worst. I was sent to palliative care where they have been working with me with a psychiatrist and a D.O. (which is a doctor of medicine). They put me on meds for depression and anxiety and also baclofen (muscle relaxer). I feel much better now. I have already started my bucket list by taking a 7 day cruise to Mexico. I am also doing a 14 day cruise to Alaska in August and a 2 week trip to Texas in Nov. . My best advice is see the psychiatrist and get the right meds to stop the anxiety and depression so you can start living again. Make your bucket list and go for it...we’re hoping we can continue our bucket list next year and go to Hawaii. I AM GOING TO LIVE WHILE I AM ALIVE...good luck...best wishes.
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Sille,
So you don't think I forgot about you, I just wanted to let you know that we've not heard back from the neurologist. My husband has not gone to see the psychiatrist yet and lost his contact info so he was in touch with his neurologist to get the name again. When we hear, I'll let you know.
Have a good weekend.
So you don't think I forgot about you, I just wanted to let you know that we've not heard back from the neurologist. My husband has not gone to see the psychiatrist yet and lost his contact info so he was in touch with his neurologist to get the name again. When we hear, I'll let you know.
Have a good weekend.
Sille
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Well, I have an appointment all set for next Monday to meet with Dr. White at the South Campus here in Calgary. He is a Neuromuscular Specialist so I'm very hopeful I'll have more answers than I have now. Looks like I'll have a bunch of EMGs done on various parts of the body so I will have a definitive answer...ALS or other. I've already had an EMG done on both legs a few months ago that came back negative so I hope these tests are the same.
Fingers crossed everyone.
Fingers crossed everyone.
Nikki J
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Best of luck. Hoping along with you.
Make sure you read the sticky post here on getting a diagnosis and also the one of the general subforum for second opinions. Some things will probably be different for the Canadian system but basic preparation is important to get everything possible from your visit
Make sure you read the sticky post here on getting a diagnosis and also the one of the general subforum for second opinions. Some things will probably be different for the Canadian system but basic preparation is important to get everything possible from your visit
ShiftKicker
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That's really soon- excellent. I am so glad for you to be able to get access to a specialist and answers so quickly. I hope the news is good. I do recommend you bring in a written list of questions if you have any.
And maybe have a read of this: https://www.alsforums.com/forum/do-i-have-als-als/30138-getting-diagnosis.html
While not all points apply to Canadians, there are some good recommendations. Keeping a copy of any reports sent to your GP is a really good idea. Your gp's office will be able to provide them to you. It seems to be standard practice in Canada for specialists and anyone you've been referred to to send a summary to your GP. I've found out a lot of detail about my visits by reading these reports- much of which is not conveyed to me while speaking to the doctor.
And maybe have a read of this: https://www.alsforums.com/forum/do-i-have-als-als/30138-getting-diagnosis.html
While not all points apply to Canadians, there are some good recommendations. Keeping a copy of any reports sent to your GP is a really good idea. Your gp's office will be able to provide them to you. It seems to be standard practice in Canada for specialists and anyone you've been referred to to send a summary to your GP. I've found out a lot of detail about my visits by reading these reports- much of which is not conveyed to me while speaking to the doctor.
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Good luck on Monday, Sille. I'm still waiting on info from Dr. K about a psych, but he's in Switzerland at a conference until next week.
Please come back after your appointment and let us know.
Thinking of you.
J
Please come back after your appointment and let us know.
Thinking of you.
J
Sille
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Well, the appointment went well. They did EMGs in legs, arms and back...all clear. So, as the doctor said it's not ALS...at least not ASL as of right now. He was not being a downer, just being realistic. He point blanc said he does not know what I have. He does believe it is UMN related and Not Lower which is good.
So, more testing I go. Spinal Tap, additional blood tests and genetic testing are now in my future.
I will say how lucky I am that I now feel like I've finally found the right doctor. He is one of the lead doctors at the ALS clinic here in Calgary and now that I'm on his roster of patients things sound like they are going to move faster. All of these additional tests should be done in the next 30 days.
Anyone else out there who may be in the same boat? How likely is it that ALS could present in the future?
So, more testing I go. Spinal Tap, additional blood tests and genetic testing are now in my future.
I will say how lucky I am that I now feel like I've finally found the right doctor. He is one of the lead doctors at the ALS clinic here in Calgary and now that I'm on his roster of patients things sound like they are going to move faster. All of these additional tests should be done in the next 30 days.
Anyone else out there who may be in the same boat? How likely is it that ALS could present in the future?
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HI Sille,
I am very glad that you do not have ALS. I do hope that whatever is going on with you, though, is found quickly and is treatable. Please keep us updated.
J
I am very glad that you do not have ALS. I do hope that whatever is going on with you, though, is found quickly and is treatable. Please keep us updated.
J
ShiftKicker
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Excellent news, Sille. I hope you next battery of tests goes well and keeps up the trend. With regards to whether ALS could present in the future- it depends on what your neuro's findings end up as and the cause of your possible UMN symptoms. It is impossible to speculate at this time- which is a hard reality to contemplate.
The more info you get from your neuro about your symptoms may be can definitely help with trying to figure out what you are looking at. Neurological issues without a definite precipitating injury are rarely simple and your specialist is the person to talk to in order to get as much info about what you may be looking at as you can. "What am we looking at here?. What are the differentials?" can sometimes open up a conversation with them about your symptoms.
The more info you get from your neuro about your symptoms may be can definitely help with trying to figure out what you are looking at. Neurological issues without a definite precipitating injury are rarely simple and your specialist is the person to talk to in order to get as much info about what you may be looking at as you can. "What am we looking at here?. What are the differentials?" can sometimes open up a conversation with them about your symptoms.
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