Looking for hope

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overthinkingit

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Joined
Feb 22, 2023
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
AU
State
SA
City
Adelaide
Hi and thank you for your precious time. I'm a 40yr old F, and have some concerning symptoms which are progressing. In Oct 2022 I suffered what the dr believes was a terrible ear infection. After that, I've not been right. Doctors think it was a coincidence of timing and CT, US and ENT review can't find anything to explain my symptoms. So that could be totally irrelevant.

Early Dec 2022 I was driving and all of a sudden my left arm felt strange and weak. Holding the steering wheel became a real effort. I shrugged it off, thinking I must've pinched a nerve or something. No change a week later so I went to GP, CT scan showed no pinched nerve, GP said to monitor it. About a week later I noticed that I could not engage the left muscle in my neck, it is the platysma muscle. To this day, there is no movement, but the right side is fine. Dr still stumped. Over the months my arm has gradually felt weaker and has strange sensations. Almost like numbness, but when I touch the skin, I can feel the touch. Weird pulling feeling down to my thumb and forefinger. Also my pinky is now starting to curl behind my ring finger. I can see (and so can my husband) that my left deltoid and trapezius muscle is definitely much smaller on the left side, and the whole upper arm is now appearing smaller. Recently I've noticed holding my 4yr old is hard on the left, and washing my hair is an effort for that arm. My grip strength still seems fine to me.

In early January my left leg started to get similar feelings to my arm, from ankle to groin. Only in last few days though has it started to feel weaker. I'm not stumbling or tripping at all. The calf muscles feel like I've done a massive workout 24 /7, and sometimes feel crampy but I don't think it is actual cramp.

I have lots of twitching in my body, mainly left leg and arm, and occasionally in my diaphragm. During the night I am often woken by almost a quivering feeling through my body. Sometimes my whole body jerks, from one spot to another. I've noticed cold temperatures definitely make it much worse.

The left side of my torso is also getting strange sensations, but they do come and go at the moment.

I have had goosebumps over my whole body constant for 18 months, since having shingles on my face. my left leg is the main area for the last 3 months. Dr says unrelated. I had an MRI a year ago when I started getting the goosebumps and weird sensations. Found chiari 1 malformation with 10mm bulge. Also found several small lesions that Neuro wasn't worried about. No sign of MS.

Went back to Neuro a few weeks ago, and I queried MND. He didn't seem concerned about that after his review so guessing my reflexes must've been OK. I do know that the Babinski reflex was absent in both feet, not sure if connected to this. Going back for another MRI next week to see if there are any changes from a year ago. He's mentioned other tests based on results of MRI, presumably NCS and EMG. Also, said unlikely the chiari is causing the symptoms, although it's still a possibility in my mind (definitely a better outcome).

There's a lot going on, and GP has ruled out a lot via heaps of blood tests. Months of constant arm weakness, muscle loss strange sensations and twitches are driving me crazy with worry. I'm sure there must be an explanation for all of this, but right now, all that is fitting the bill (in my mind anyway) is ALS. My anxiety is through the roof, which definitely could be causing the twitches.

Any advice on whether this looks like possible ALS would be so very much appreciated. Or maybe you've seen others with similar problems that have been otherwise diagnosed. I've scoured the posts but everyone is so different. Thank you so much for your time, it was a long post!! I hope I haven't wasted your time.
 
No, it doesn't look like ALS. Keep working with your doctors. Post-viral issues match up to what you're experiencing but, again, it'll take a doctor to figure it all out.
 
Thank you so much for your reply! I will continue to follow this through with doctors, and will report back on what they find. Now it's just a matter of managing the stress until I get answers. The weakness and loss of muscle is very scary. Thanks again, your time is very much appreciated.
 
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