A few questions about My Dad's Diagnosis

Fonz

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Dear all,

First of all, I'd like to say hi to everyone here as I am new. To be honest I have been following this forum for almost a year now and I must say it has been great help so I would like to thank everyone who have contributed to this forum.

I'd like to introduce myself in short and will try to keep my post as short as possible..I moved from Australia to Germany 2 years ago, working and living here. My parents live in Turkey.

My dad was diagnosed with ALS on Feb 2018 based on the EMG he had. He visited 3 different neurologists and got diagnosed with ALS. He was able to walk and drive last year, except he lost his balance last July and hit his head on nightstand, he almost lost his eye.

Recently he can hardly move, has drop head syndrome, can hardly lift his feet and can't use the arms especially left arm. Muscle waste is visible on both arms.He doesn't have problem with speech, however swallowing is a bit harder for him. I try to visit him as much as I can, was with him last week and made me so sad to see him like that. He can't go to bathroom without 2 people supporting him.

Since it is a complex disease and can be misunderstood, based on my father told me, i suspect there might be something else and I appreciate your inputs.

He told me last week that in the very beginning of the disease, he had itchiness on his left arm for like 3 months which he didn't tell anybody. He had so much pleasure scratching it but he knew there was something wrong. He also felt numbness on his left arm, which he thought might have indicated heart disease, got his heart checked but no problem.

Considering the disease started on his left arm and that was the first body part got affected, we have come to the conclusion that it had definitely got something to do with this. As far as I am aware itchiness and numbness are not ALS symptoms, therefore we all are a bit confused now.

He has also lots of joint pains which are not common in ALS especially while sleeping at night.
He also drags his right foot while we walk him, actually he has been dragging it for quiet some time now.

Should we visit another neurologist? It is kind of hard to find an expert in this area in Turkey but we will try.

Any advise will be highly appreciated.

Thank you all in advance
 
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KarenNWendyn

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Sorry to have to welcome you here.

You’re correct that itchiness, numbness, and joint pains are not part of ALS. The foot dragging definitely can be consistent with ALS.

You said he saw 3 different neurologists and his diagnosis was confirmed by EMG. Hopefully at least one of the neurologists was a neuromuscular disease specialist. If not, then we do recommend getting the opinion of one. The neuromuscular specialist is often more comfortable in interpreting EMGs in ALS and also in ruling out ALS mimics.

He could have ALS plus other issues. The arm numbness may reflect a pinched nerve in the neck, for example. I would definitely talk to his current neurologist about that. If he had an MRI of the neck, that could help clarify the cause of the numbness.

As far as the itching and joint pain, a good exam by a primary care physician would be a place to start.
 

Fonz

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02/2018
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GE
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Germany
Thanks Karen..
He had MRI which was clean. We will definitely try to see neuromuscular specialist. It is just this itchiness and numbness makes me confused and also joint pains.
Makes me think of a bacteria or virus or something.
He also has herniated disk.
We both visited his neurologist last week, to be honest she ignores other possibilities and keeps telling same things over and over..I already suggested them to get another opinion..

Ugur
 

lgelb

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Welcome, Fonz. I'm sorry to hear about your dad.

Joint pain at night may signify that his joints are not getting enough support, as can be had with foam and small pillows and pads. It is important for the joints not to be stretched out or dangle in sleep, since ALS makes them weaker and this can cause pain or even tears or dislocation. For example, elbows can be bent with hands resting on the abdomen or chest.

If I understand correctly, the numbness in his arm is no longer an issue?

The itching is not necessarily significant as regards the diagnosis one way or the other. For instance, a change in its strength could mean that it was positioned in a way to put pressure/create dryness when he slept or sat. Was there a rash? Was the area hot?

Best,
Laurie
 

Fonz

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Hi Laurie,

Nice to hear from you.
Numbness is no longer an issue that is correct. I know what you mean regards to itchiness, however the weird thing that was itchiness started along with fasciculations (or before as he mentioned and after fasciculations followed in the left arm). As far as I am aware there was no rash.
As Karen says he might have Als plus issues, at least we need to look after them to comfort him.

We are giving him Ibudilast and supplements so far as everyone. It's been over a month we are giving him Ibudilast mostly 30mg a day, however no improvement so far..
I will of course keep you updated in case of any changes.

Thanks
 

jethro

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ugur,
no benefit from ibudilast at least 6 months after starting. are you sure that 30 mg/day is enough?
 
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Fonz

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ugur,
no benefit from ibudilast at least 6 months after starting. are you sure that 30 mg/day is enough?
Hi,
It’s been 2-3 months. We tried to give him 60 mg but he said he doesn’t feel well when the dosage is high. Unfortunately no benefit so far. By the way we tried to show him to another neurospecialist ( I wasn’t there)and that doctor once said again he definitely has ALS.
I am still concerned about this itchiness started in the beginning of the disease as a symptom for 3 months but it seems like no doctor really cares about it. She said it could have been allergy or something. Anyway we have to take whatever it comes
 

jethro

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ugur,
i'll tell you one story. think and conclude: mother and 12 yo daughter came to neuro. girl has been diagnosed with ALS (!). mother said to neuro: she has a lyme, look at this (shows blood test, many papers etcetc, and she is on abx!) neuro: i am neurologyst, it is written that she has als, neuromuscular dpt is competent for als. i dont want to comment her other dx. it was in danemark or sweeden.
people used in a trial 50mg/day.
so...
"Anyway we have to take whatever it comes" - wrong, but most people do like that!
take care,
j
 
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affected

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My Chris had skin changes - strangely vague dry and itchy patches - well before ALS symptoms. He ended having many fungal skin issues during the disease, before he was moving about little. Lots of PALS have fungal skin issues - we know it, but the neurologists may not be as aware of it and there is no known link. But it is reported a lot. Try something like Moo Goo, or a good moisturiser with anti fungals, even coconut oil on the skin.
 
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