Anxiety ridden and scared that I have ALS

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chaoticjane

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Hello, thank you for taking the time to read this! It means a lot! I’m a 23 F that has Ehler Danlos Syndrome and I’m scared about what’s going on.

December of 2022 I started getting horrible pain from my elbows going down into my arms followed with fatigue. One day I woke up and could turn my head without pain going down my neck, to my scapula, into my left arm and causing twitching in my left thumb. The twitching has continue and as of last week I noticed thenar atrophy.

January 2023, I had my EMG done to test for cubital tunnel and a pinched nerve. Doctor said EMG looks good and I brought up how I’ve been having fasciculations. He said “everyone has them”. I’ve had them all my life but never as consistent as my thumb. I still haven’t gotten my report back from him despite it being on Jan 3rd. I have still been having twitching in my thenar muscle followed with atrophy but no weakness. My thumb feels tense/stiff. I still have full ROM. I brought this up to my sports medicine doctor and he said it sounds like I have a rotor cuff issue. He looked at my thumb and disregarded it.

Right now I’m so scared that my signs are too early to catch on an EMG. I’m very anxious and I want to know what you all think and to get opinions. Thank you so much!
 
EDS can cause or worsen everything you've described, Jane. Have you checked in with your medical geneticist?

A PT and/or OT that knows connective tissue disorders would be my next move. You might also be referred to a phys med/rehab specialist physician ("physiatrist"). Your clinic or the NMF should be able to refer you. The NMF has clinical coordinators who should be able to steer you in the right direction. Even if the nearest expertise is a ways away, you could get started, then set up a regimen at home. There are also PT networks that specialize in a la carte telehealth if costs are a concern, to get another point of view.

Meanwhile, I'd take good care with your positioning in sleep, recreation, and work. You only start with so many joints, tendons, ligaments, and inches of skin. A good therapist can help you leverage what you can do and avoid what could make things worse.

I don't see any reason to be worried about ALS, not just because you have EDS (my husband had Marfan), but because what you describe isn't an ALS onset and with what you've said, the EMG would have showed distinct changes if you had ALS or anything like it.

Best,
Laurie
 
Thank you so much! I’m involved with a pt program right now and I’ve been involved with a geneticist previous when I wanted to donate eggs. Luckily no other genes were flagged besides EDS. I go for a ECG next week
 
Update on things:

My twitching has pretty much become widespread throughout my body. Especially my legs and primarily staying in the bottom of my feet and my toes. My thumb is not twitching as much.

I still have no weakness present.

Also I was wondering as I was reading through the forums. Does twitching lead to atrophy? Or is it weakness, atrophy, and then twitching? I’ve seen multiple things throughout the forum on the subject and I was wondering if I could be educated on it a little bit?

Thank you,

Jane
 
We really do urge people to read the "Read Before Posting" link. It contains the answers to most questions that people come here with. Its intended purpose is to provide information to the most common questions.

From the link:

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On its own, twitching is just twitching . Most often it leads to nothing but pointless worry. There is no shoe you should be waiting to drop from what you have described. EDS can lead to both weakness and atrophy, but that has nothing to do with ALS and does not follow on from twitching.

The hallmark of ALS is inability to do things you used to be able to do, along with specific EMG findings. Not pain. Not twitching.

If the PT is not all it should be, you should feel free to seek out new resources. PT for CTDs is a specialized area. You may also want to consult with a physiatrist (physical medicine/rehabilitation physician) to make sure your regimen is all it could be in your situation.
 
Please do read the post linked 2 messages above. I'm surprised if you have been reading through the forums that you haven't come across that important post already. Read it through really carefully, we put heaps of effort into creating it carefully.
 
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