Just diagnosed this morning

Status
Not open for further replies.

blkbrd

New member
Joined
Jan 18, 2022
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
OR
City
Portland
Still in shock really. I don't know what to say. I just had an appt w/ neuro and had the EMG. Based upon those findings and my MRI results he feels quite confident that this is ALS.
Brief history: Started around May with the sensation that I wasn't getting a full breath. I kept trying to breathe deeper and eventually began to have fuller breaths. A bit later I started to lose my voice and I had an itch in the back of my throat. After that I began to have muscle twitching in my left arm, which later moved to my right. I've had pins and needles in my arms and face. Stiff achy joints with weird sensations. Difficulty swallowing.
As I said, am in shock. I didn't ask enough questions. The only thing I was able to ask was "I thought you couldn't see ALS in an MRI?" He said in rare cases you can.

Any advice on how to prepare for my second opinion? What do I ask? I didn't even see my MRI. Should I ask to see it and have it explained further?
I thought it can take a year to diagnose this, why is it so obvious in me? I just went to my first appt a month ago! I thought this was a 'failing not feeling' condition? Should I not be having pins and needles in my face? Sorry, ranting.

Any advice would be greatly appriciated.
Corbin
 
Hi, Corbin, sorry to hear this news. I left your status "Learn" for now since you have not had a second opinion. Will that be at OHSU? Is it scheduled? That is normally something that can happen fairly quickly.

Here is a sticky that may help answer your questions. If you can also post your de-identified EMG and MRI reports, we can be more helpful.

It's true that the ALS diagnosis can be made pretty confidently when the disease is "in full flow," but we always advise a second opinion in any case. Off the top, there's always room for hope that the second opinion changes the diagnosis, and yes, some of the things you mention aren't typical in the onset picture, so that hope certainly exists for you as well.

Best,
Laurie
 
I am very sorry. Of course you are in shock.
re mri. You are entitled to and should get the radiology report. You can get the images too but unless you are a radiologist or neurologist they may not help you. Of course you are entitled to an explanation. They saw something on my mri too. The report was not diagnostic but raised ALS as a possibility and said clinical correlation required, that being the emg and doctor exam

it can take a long time to get diagnosed but usually it is because it takes time for most to get to the right doctor

speaking of right doctor was this an ALS specialist or a general neuro? Second opinions are very important and always recommended.
sorry you had to find us. Keep us posted
 
Thank you for the replies.
@laurie- My 2nd is with Kaiser. The neuro implied because Kaiser has a ALS clinic that they wouldn't pay for an outside opinion. Its crazy how it all went down. I went to a gp for the initial visit...she called the neuro on duty described my symptoms, he says 'sounds like ALS'. Then I go for the MRI and at the top of the results listed as why I'm getting the MRI 'slurred speech possible ALS' then in its summary 'suspicious of ALS'. So fast. Head is spinning.
@nikki-I don't really know if he is a specialist...I assume so since I had to see him to determine if it was in fact ALS. I just want them to show what and why, because I agree, I can't make any sense of it. Any of it.
Thank you both again.
Corbin
 

Attachments

  • EMG.JPG
    EMG.JPG
    187.1 KB · Views: 584
  • NCS.JPG
    NCS.JPG
    325.2 KB · Views: 600
  • summary.JPG
    summary.JPG
    128.4 KB · Views: 604
Sorry to hear that, trust your second oppnion sadly they are seldom wrong. I know it’s horrible news but don’t beat yourself up we just have to live with it.
 
The first neurologist I saw diagnosed me with Primary Progressive Aphasia. He hadn’t seen the MRI but just heard the technician’s report. I asked for a second opinion from a neurologist that I heard was much more trusted. He looked at the MRI; CT scan; blood tests to rule out other illnesses; ultrasound of the arteries in the neck. I had had a voice tone change for over a year- hoarseness and scratchy throat that I thought was related to sinus issues. I had some problems swallowing pills that I had been taking. I had some trips and falls to my knees. The most disturbing symptom was that my speech slurred at times- particularly when I was tired. I started getting tired easily. He diagnosed me in June 2021 and all these symptoms have worsened significantly since then. He did Emg tests and then a muscle biopsy, that showed that my muscles in my legs had started to deteriorate. He sent me to a pulmonary clinic and they determined that my pulmonary function was lower than it should be, so I am on a bipap machine at night. I was immediately started on Riluzole, and since have started regular Radicava infusions. I had to start using a cane and have physical and speech therapy.
 
MRI can ID damage within the corticospinal (CS) tract. CS tract is where motor neurons travel from the brain and through the spinal cord. When they finally did one for me, it showed white hyperintensities in the brain and further down into the bulbar region. It confirmed upper motor neuron involvement that is necessary under the current guidelines for diagnosis.



1645243477659.png
 
Status
Not open for further replies.
Back
Top