Father's ongoing diagnosis of an MND

[pagefan01]

My father (68 yo) developed the following symptoms over the last six months -
(a) Weak grip in right hand index finger and thumb
(b) Niggling pain in right shoulder
(b) Gradual speech issues, including slurring, slow speech, low voice

Apart from the above, there are some anecdotal symptoms, like numbness in one leg (sleeping leg) during sleeping on a couple of occasions. Around 5 months ago, after my father noticed his speech issue, he got an MRI done. He saw two doctors, one said there is nothing alarming, prescribed some muscle relaxants and the other said that it was a mini-stroke but MRI was clean. That doctor prescribed some muscle relaxants as well and also suggested physical therapy.

Over the next two months, my father continued to take the prescribed medicines and went for physical therapy but noticed a gradual decline in his speech quality (low voice and slow speech) and slight deterioration in his right hand grip as well. So, he consulted with another doctor around three months ago who did another MRI. This doctor also said that there is nothing in the MRI. So he suggested to get EMG/NCV done around late-March and indicated in May that it could be an MND. But due to Covid restrictions, my father couldn't get an EMG done (and still waiting for an appointment).

Current situation is that he is taking a few skeletal muscle relaxants and vitamins with daily physical therapy but doesn't see a noticeable improvement in any of the symptoms. He does experience better speech days when words are slightly fluent. I also noticed some saliva build-up on days when sleep is more slurred. He also has hypothyroidism and slightly high cholesterol so he is also taking thyroid medicine and a blood thinner. While we wait for EMG to be done, I wanted to post this here to see if you fine folks had any insights.

Thanks for reading.

 

[Nikki J]

It is hard to say. Is his thyroid in tight control? Why muscle relaxers? They could be affecting speech

hopefully he can get an emg soon. Is he seeing a neuromuscular specialist? If the doctor said mnd he should

 

[pagefan01]

Thanks for your reply, Nikki. He had higher TSH level (7.5) in February 2020. No tests have been done since then. Muscle relaxer (Baclofen) was given because of the weakening hand grip (doctor thought possible spasticity). His speech issues started before that prescription began.

He is seeing a neurologist, who suggested EMG.

 

[pagefan01]

Update: My father got EMG/NCV done. The report (attached) indicates MND. Need to follow-up with the doctor. Any thoughts @Nikki J ?

 

[Nikki J]

They only did the emg in one muscle?? They need to demonstrate widespread changes for an als diagnosis and they didn’t look. You also said he has upper extremity and bulbar symptoms. Confused. Where is he and what kind of facility did the test

 

[pagefan01]

Yes, they only did one muscle. You are right, he has upper extremity (right hand weak) and bulbar symptoms (speech slur). The tests were done by a neurologist in India. Recently, my father mentioned a few more issues -
sleep issues (dry throat, numbness in one leg),
breathing issues (doesn't feel he is inhaling enough air through the nose, breathlessness if he tries to inhale too deep)
sometimes a tingling sensation that runs down from lower back to the knees
general tiredness, increased speech slurring

From whatever I have read on online resources, it seemed to me that tingling is not an ALS symptom so was anticipating a diagnosis like MG. But, based on the emg report, his doctor has now confirmed that it is ALS.

 

[lgelb]

This is far from "confirmed" as re ALS and even the report only describes it as a differential. One muscle and a vague report that wouldn't meet criteria even for that muscle don't do it. He needs a diagnostic EMG.

I would encourage him to contact the national association to help him find a reputable center.

 

[pagefan01]

Thanks for your input. I have now emailed the organization (Asha) to start a dialogue. Do you have any suggestions on which direction we should focus on first? I would like to help him in easing the symptoms, like tiredness, sleep issues. Not sure if pushing for another EMG (with a different doctor) should take precedence or not.

 

[lgelb]

It's not the diagnosis per se (though sometimes there are government benefits for it), but hopefully finding a clinic that has seen ALS before, so he would get more informed followup and treatment. Lung tests to see if he needs a BiPAP, for example, which could help him get more refreshing sleep, if it's needed to support his breathing.

 

[pagefan01]

Thanks for the reply. This conversation has me questioning the whole course of treatment in terms of medicines he has been prescribed. My father has been taking a couple of muscle relaxers (Baclofen and Tizanidine) for about 3 months now, mostly to treat pain and spasticity in his wrist/hand with I suppose gradual worsening of symptoms. He also undergoes TENS/EMS physiotherapy to relieve the pain. Since the original prescription, subsequent consultations with two separate neurologists suggested to continue taking the muscle relaxers. In your experience, are muscle relaxers usually prescribed for such symptoms for such a prolonged period? I see that these relaxers may have side-effects as noted by @Nikki J earlier. I'd understand if you would not like to speculate here.

 

[lgelb]

Many people here use one or both for a prolonged period if they have intolerable spasticity otherwise, but there are side effects. He should be monitored for the benefit/risk ratio for both, and taper down/off if they are not helping or if he can manage the spasticity in another way. Caffeine in particular interacts with tizanidine, increasing the blood levels, which can play havoc with blood pressure and cause fatigue as you mention. But the drugs themselves can cause fatigue, dizziness and other issues as well. Usually only one would be started, and the second one added only if the first one is not well tolerated at an effective dose.

If they are serving a purpose, and are both needed, that's one thing, but I'm not clear from what you say whether that is the case.