Next steps

[Bubbs33]

My husband who is 62, experienced sudden weakness in his left arm (dominant side) in March 2024. This included loss of grip strength. I made an appointment with GP in May as it wasn't getting better with physio and he was so disheartened. Saw GP early July. Was told an EMG would take about 6 weeks and the waiit to see a nuero is a year. So got the appointment for EMG for December, not 6 weeks, almost 6 months. Hubby has an appointment with GP this week. He is not doing well. There is obvious atrophy in the arm. He has no fine motor skills in the left hand. He drops things, can't use a drill or screwdriver, can't button up shirts, or do up his belt. All benefits for physio and massage have been used for 2024.

As the EMG is not til December is there any point in going to the appointment with the GP this week? I really want to help my husband. I encourage him to do what he can. What should we expect? What's next? How do I help?
The shortage of medical care is scary.

 

[Nikki J]

I know things are very difficult in Canada right now. Everywhere is struggling. It is possible that your gp visit could result in him being prioritized a bit

If that doesn’t happen do you have the resources to go private? A neurologist exam and an emg would yield a lot of information. If this is als the emg should be florid and surely a diagnosis would get him to a neurologist in the system quicker

 

[Bubbs33]

Ty. I appreciate your reply and suggestions. I will share with hubby.

 

[ShiftKicker]

If you know where the emg is being conducted, it is reasonable to call that office to let them know you are happy to come in short notice. Let them know how much notice you might need and what number is best to reach you at. With cold, covid, flu season coming upon us, it's likely their scheduling will be affected. Having someone who can be slipped in easily is a godsend for clinics.

Like Nikki, I recommend you keep the appointment with the gp, as it may help expedite a referral.

 

[Bubbs33]

Ty. Followed your advice. We got an appointment 2 weeks earlier. Will keep checking.

 

[Bubbs33]

Ty you all for your replies and suggestions. The appointment with the GP went well. At this time, my hubby has an EMG at the end of November, an MRI in a few weeks and a referral to an internist, to assess possible causes of his condition and decline.

 

[Bubbs33]

Good day all,
Firstly this is an amazing support group and tool. Your selfless sharing and generosity are much appreciated.

As a reminder, hubby has the following symptoms:
- no strength in left arm
- no grip in left hand
- can not pronation forearm
- fasciculations
- can't hold a pen, drops things, no fine motor ability in left hand, needs help dressing


A bit of an update...

1. Saw internist mid-october. Dr K noted there was significant
atrophy in the left hand - he thinks it started 1 yr ago. Noted lots of fasciculations. Did a full physical neuro exam - noted that there was weakness in left leg, and brisk reflexes - ordered a CT scan. Dr stated that tests will help determine what MND we are dealing with and then a referral to a neurologist.

Oct 12 - daughter noticed her dad drooling. I noticed laughing and crying more frequently and uncharacteristically choking on words

Oct 16 CT Scan - clear

Oct 23 - MRI - table too small - not done

End of October - appears to have difficulty clearing throat, is it a cold? Appears progressive, need to watch.

Nov 5 - still clearing throat often. No other signs of a cold.

Complaints of spasticity and cramps in hand and forearm. Also remarking that shoulder and arm are so heavy and weak.

35lbs weightloss since Easter.

Nov 10- has had very quiet/low voice since beginning of November. Continues to clear throat often with no other signs of a cold.
Lots of laughter today.

We still have 2 weeks til the EMG. The appointment to review test results is early December.

The wait is so difficult. I try to keep positive especially with hubby. I try to find joy in our lives. I quietly cry and worry when he sleeps. I worry about every thing, cost of living with a degenerative disease, life going forward, our mental health etc. I see my GP this week to ensure, I'm doing all I can to be a healthy and capable caregiver.

Ty for reading. Open to thoughts, comments and advice.

 

[Nikki J]

It sounds like you are doing a great job. I am glad you are prioritizing your own health too for both your sakes.

To be honest the symptoms and progression are most worrying. The emg is soon. While you wait consider recording his voice if that is important to anyone in the family.

Weight loss is concerning. Look at ways to get calories into him. Why is it happening?

I am so sorry

 

[Bubbs33]

Ty for your honesty and positive comments

 

[Bubbs33]

Update...hubby had an EMG on Friday, Nov 22nd. Testing of arms, leg and throat. Physiatrist stated there was significant nerve damage, some atrophy and hyperreflexes in legs. Sent report to GP with recommendations for MRI and referral to Neurologist. GPs office confirmed today they are making referrals for both MRI and Neurologist at 1 of the ALS clinics in Ontario Canada. Curious what to expect at a first appointment with a Neurologist at such a clinic. This roller coaster is exhausting and we're not even started yet. Cheers!