Bulbar symptoms/Hip atrophy

[Wisemonkey56]

Hi, I started with the ocassional jaw jerk, esophageal spasms and throat mucus about 18 months ago, but thought nothing of it. In June 2020 I suddenly developed hot hands and body temperature dysregulation. I was biting my mouth and having to be careful how I ate.
In August 2020, I had a total hip replacement due to osteo arthritis. I healed well over the next two months and then began to have wriggling sensations under the hip scar and it felt like the hip muscle was atrophying. I'd also dropped in weight also I was eating the same amount of food. I'd also developed some fasciculations but more body jerks. When I had the operation, I had no idea that anything serious was happening within my body.
In Nov I went back to the orthopedic surgeon who recommended more exercises. By Feb 2021 I was getting pain in my hip and it felt like skin on bone. Am MRI confirmed atrophy and replacement of fatty tissue. My orthopedic surgeon couldn't explain why it had atrophied and he'd never see this pattern on an MRI, he said nothing could be done about it (which is true). I'm scare of what might happen to my leg as it continues to worsen. The placement of the hip was fine, so it's not an operational mishap.
Recently I've been biting my mouth at night. I've seen 3 neurologists in the last 6 months.
I am due to have some EMG at the end of March.

 

[Clearwater AL]

Wise monkey, you joined the Forum last November 2020,
I’m sure you have read numerous Threads since then and
are aware of our position on fasciculations.

You gave us a somewhat extensive review of your hip problems.

But you wrote… “I've seen 3 neurologists in the last 6 months.”

It would help our very ALS knowledgeable members if you
would also expand on their initial office observations, physical
tests and considerations as much as you have concerning your
ongoing hip situation.

And... until you have a confirmed diagnosis of ALS in your Bio
you may consider changing "Reason" from PALS to something
else.

 

[Wisemonkey56]

Hi, yes I have changed my status now. I have an atypical onset which is very slow, I've had some one one symptom for many years and that's the thick throat mucus, which had increased over the last 9 months so lots of throat clearing. This is not from allergy, I've been tested. Many of my symptoms are what mnd/als patients develop after they've had the disease for a while. I get intermittent breathing issues, which can last for a couple of weeks and then calms down. I have hyper-metabolism which developed after I had my hip operation. I sometimes get jaw spasms/jerks and of late have been biting my tongue in my sleep. Sometimes I have swallowing issues with dry food, it is intermittent.

I started losing weight after my hip replacement and this isn't due to cancer, thyroid etc, I've been tested for these. My Dr was very concerned. As I stated before, I have to eat twice as much now to maintain my current weight. This is not normal, especially as I used to have issues losing weight.
My arms tire very easily and are sore from the inside out. I've also had neck and shoulder pain. At night I can get the occasional brain buzz, which is like a noisy startle response, which lasts a few seconds. I've also had increased sensitivity to noise and increased bouts of tinnitus.

A few weeks ago I was flossing my teeth my fingers on the left hand became spastic, bending towards the palm. I had to prise them open with my right hand then it was very painful. So far this has only happened the one time.

Since getting the limb jerks and fasciculations (2021), I was referred to 2 neurologists who did all the proper testing and found nothing wrong. Both ignored the other symptoms I've had (and am having). The last neurologist I saw, was also very thorough, she found some and hyper-flexia on knee jerk test and ankle also.

She noticed atrophy of the gluteus maximus muscle on the left hip. She has ordered some ECG tests. A hip replacement doesn't recover well and then atrophy. I'd been doing all the exercises and walking well before this atrophy began. Now I'm only walking a short distance and am on 2 celecoxib anti inflammatories per day. It's almost skin on bone! My other hip is also becoming sore and this isn't osteo-artritis or any other condition, the MRI confirmed this as I had both hips scanned on MRI. I'm hoping the Dr who does the EMG, samples the atrophied hip.

Atypical presentations are not normal but they can occur. I don't want to have mnd, but fear this is the case.

 

[affected]

Truly your presentation is so atypical it isn't even ALS - the things you report are not ALS symptoms. Failure to be able to do things is, and this doesn't come and go, or just happen one time. This is why neurologists find nothing wrong, besides a few nondescript reflexes.

All the very best, whatever is going on doesn't line up to ALS at all but hopefully your doctors will get to the bottom of it all with you. I hope you can keep an open mind and let them work through the process with you as I'm sure it is frustration.