High Anxiety level

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JW119

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DX MND
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I started having a muscle spasm/ cramping in my left hand in Sept. of 2020 after riding my motorcycle for three long days. I didn't let it concern me at all. Fast forward to the summer of 2021, I was having lots of medical issues with knee replacements. I was holding my iPad and both hands started to spasm/cramp. I started having swallowing issues and lots of phlegm in my throat. I also notice my voice changing. I believed it was because I was intubated twice for two surgeries May and July. I couldn't sing in church and swallowing issues and choking became a bit more frequent.
I saw a ENT in November, she recommended a swallow study or a referral to a neurologist. My wife who is an RN, Kidney Transplant Coordinator thought I should see a neurologist. Appointment was scheduled, exam was thorough. He recommended an EMG, I couldn't get that done until January, 19. He performed it one my right leg and both arms, he did stick a needle under my chin for my tongue. On 02/10/2022 we saw the doctor at Noran Neurology in MN. He stated that EMG's showed signs of ALS. He referred me to the University of MN, ALS Center for a 2nd opinion. My appointment is on Jan. 17. I'll be having a pulmonary test right away and spend time with the doctor.
Prior to to getting my results, I had an upper endoscopy, they dilated my esophagus and that improved swallowing. I also had a swallow study and that went well.
Yesterday, I went out running errands and great in the morning but when I got home I was exhausted. I've been noticing more tightness in my forearms and more spasms/cramping in my hands.
I apologized for rambling and not being extremely thorough. My wife and I scheduled to leave for Mesa, AZ on Friday the day after my appointed. We are prepared to wait a day, if I need to wait for medications, giving the outcome of my appoitment.
 

JW119

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I'm sorry, my appointment is 02-17-2022.
Thank you for the link and information.
 

Nikki J

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Do let us know. If the diagnosis is confirmed two things I would prioritize- genetic testing and clinical trials. If your medical record reflect 9/20 as your first symptom you are closing in on the end of many trial eligibilities. They tend to be from symptom onset not diagnosis and are usually two years. Sometimes three

even if you have no family history genetic testing is recommended and there are trials for several mutations and expanded access for one
 

JW119

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Sorry for the delayed response. My appointment with the ALS neurologist was very thorough, he listened to me and took notes. He checked my strength in my arms and legs. It appeared that he was skeptical of my diagnosis because my strength was good. Everything changed when he looked at my tongue and observed Fasciculation's. He stated that this confirms that I have ALS, as he's never seen this type of tongue behavior in non ALS patients.
I'm scheduled for appointment with him on March 31 to have an EMG.
He did start me on riluzole.

 

lgelb

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I'm very sorry. Still, we won't change your status until after the confirmatory EMG. As Nikki said, there is life past diagnosis and in many ways it remains yours to shape, including a narrow window for trials, as she also mentioned.

Did you have pulmonary function testing as you mentioned earlier?

Best,
Laurie
 

Clearwater AL

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Edit.... removed my original reply. Sorry you have to wait a month for the EMG.
 
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JW119

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03/2022
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I had my follow up appointment my neurologist on March 31. One of the reasons it so long is that my wife and took a 5 week break from the snow and went to AZ to help out my 90 yr. old dad.
These are the notes from the doctor after the emg.
EMG was done with a concentric needle electrode.

Results:

Needle EMG study showed 1 to 2+ fasciculations and variable amount of fibrillations in all muscles sampled (including thoracic paraspinals, trapezius, and several right UE and LE muscles as shown in the table below) , except for the right triceps which showed fasciculations only without fibs, and the right vastus lateralis where no abnormal spontaneous activity was detected. Mildly to moderately reduced recruitment was noted at the right FDI, EIP, pronator teres, deltoid, upper trapezius, TA, and vastus lateralis. Recruitment of MUPs was normal at the right triceps and medial gastrocnemius. Large and/or long duration MUPs were observed at the right FDI, deltoid, EIP, upper trapezius, TA, and medial gastrocnemius. Polyphasic but not large MUPs were noted at the right vastus lateralis. MUPs at the right triceps, and pronator teres appeared normal.

Interpretation:

Abnormal study. Findings are consistent with a widespread disorder of the motor neurons, their roots or axons.
They are checking into some studies for me, especially since our state govt. just approved 25 million dollars for ALS research. I'm neurologist is affiliated with University of MN ALS Center.
Doctor's comment about my Pulmonary test, PFT showed a mild restriction with FVC 75%, FEV1 73% and MIP low at -52 cm H2O. He has no respiratory symptoms.
 

Nikki J

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I am sorry for the confirmation. I am glad they are checking studies. And I hope there is genetic testing in progress. Aside from your situation knowing could help your biological relatives if there is something found.
 

JW119

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Thank you, Nikki. I forgot to ask about genetic testing. I'll try and remember to ask on my June 23, appointment the ALS Center.
 

Nikki J

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Message them. Ii takes a while to get results and in the long shot it is sod1 there is expanded access. Invitae has free testing though it is slow. if they want you to have pretest counseling it can be virtual. Don’t wait for the next appointment. They should have offered it anyway
 
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