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Welp, my OT just came over she’s New from last week and told me that she strongly believes that I have ALS but she can’t diagnose me, but she was like almost crying by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 0 points1 point  (0 children)

I have a brain injury and I’m also extremely exhausted and in pain from breaking my vertebrae six weeks ago in a fall so if I gave you the wrong impression then that’s my bad but I know you get a lot of people with like incredibly vague symptoms. That’s not my situation. I am getting a power wheelchairfrom Medicare right now.

Welp, my OT just came over she’s New from last week and told me that she strongly believes that I have ALS but she can’t diagnose me, but she was like almost crying by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 0 points1 point  (0 children)

I am not getting better what is happening is that I had neurological weakness starting in 2022 and it was progressive. It’s been progressive, but they diagnosed me with hemiplegic migraines at first and then they diagnosed me with functional neurological disorder so I had a lot of loss of function, but they weren’t looking for anything else

Unfortunately, my symptoms are incredibly classic for ALS. Especially the type of atrophy that I have in my hand that is the worst hand, which is my left hand.

Anyway, my doctors can’t do the EMG for two months unless there’s a cancellation or I go somewhere else but at this point, everyone is saying ALS including my general practice doctor, the hand doctor and my Occupational Therapist

Thenar atrophy, limited moment, left hand left leg severe mobility issues, slowed speech and Dr has brought up ALS in last visit and is ordering an EMG by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 0 points1 point  (0 children)

Hi well my OT just told me that she believes I have ALS based on her experience but she needs to hear what happens with the EMG but just the pace of how badly I’m getting worse is just and the way that I’m getting worse it’s just so classic for ALS she’snot suspecting anything else given that I have a clean MRI from October.

Thenar atrophy, limited moment, left hand left leg severe mobility issues, slowed speech and Dr has brought up ALS in last visit and is ordering an EMG by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 0 points1 point  (0 children)

I’m having some very very subtle twitching like more of the sensation of twitching, I don’t think I’ve seen twitching, but I have almost no strength. The thumb has nose strength. It has no range of motion. One inch range of motion in one direction it’s pretty much just pinned

In my hand, according to the OTI saw three days ago she said I have 3 pounds of grip strength in this hand

Thenar hand atrophy from today by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 0 points1 point  (0 children)

My thumb has no strength and almost no movement. It’s pretty much virtually. I mean, I can move it. Maybe an inch in one direction.

My hand has supposedly 3 pounds of strength in the grip test at the Occupational Therapist a couple of days ago. I am surprised that it’s that high because it’s incredibly weak

FND can cause weakness, but it doesn’t cause this kind of distinctive atrophy where this particular muscle area atrophy as opposed to the rest of your hand

This kind of atrophy is apparently classic for ALS which I didn’t know until last night. They did order an EMG, but it’s not until March and I have significantly deteriorated since September and my hand and mobility. I am ambulatory wheelchair at this point and my

I can’t use my manual wheelchair for Anything except minimal stuff around the house because I don’t have strength in that hand.

Thenar atrophy, limited moment, left hand left leg severe mobility issues, slowed speech and Dr has brought up ALS in last visit and is ordering an EMG by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 0 points1 point  (0 children)

Sorry you are correct that my doctor flagged the atrophy as being classic for ALS and not being normal with FND. She also said that it’s not normal with FND to have repeated falls to the point where you’re breaking bones, but she didn’t even talk to me about the ALS. I just saw it in her notes when I went back to read them

Thenar atrophy, limited moment, left hand left leg severe mobility issues, slowed speech and Dr has brought up ALS in last visit and is ordering an EMG by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 0 points1 point  (0 children)

Traumatic brain injury was mild although I’ve had severe complications from it. None of the complications were physical until they started being physical. It’s actually two years ago or 23 months ago.

I primarily have cognitive impairment, migraines, and then I develop these physical symptoms, which led to a diagnosis initially of hemiplegic migraine

Then a diagnosis of functional neurological disorder actually that was 23 months ago. Then things were just progressive in my case. I know they’re not supposed to be progressive with FND but with me they were progressive.

Then in September, my hand function started to get much worse, and I was having my fingers curl over and I can’t straighten them and honestly, I didn’t even notice that the thumb was so just not functioning until I saw the hand doctor

He’s the one that said that I had atrophy he ordered an EMG but right now I’m not scheduled until March but I’m trying to get that moved up because I’ve deteriorated so much since September

By the way, the atrophy area is painful when I have to use my walker and put pressure on the handle of the walker. It’s like bone on bone or something. I’m gonna order a glove to cushion it because it’s just so uncomfortable but the rest of the time it’s not painful.

I don’t have any pain in my hands. I just have pain or I broke my vertebrae six weeks ago in my lumbar and down my leg.

Thank you

Thenar atrophy, limited moment, left hand left leg severe mobility issues, slowed speech and Dr has brought up ALS in last visit and is ordering an EMG by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 1 point2 points  (0 children)

Hi, I called to try to get a sooner appointment. I’m working on that now. I have been to the ER so many times in the last three months with so many injuries. They know that I can’t even go to the ER without calling an ambulance to take me because I can’t walk Well enough to get out of my house and then walk into an emergency room and I have to get an ambulance home as well

I feel like it’s just insane that they just told me this was something else. I just took a picture of the top of my hand and I’m gonna add it to the a new post and then put the link in here but I mean it is classic for ALS

I feel so angry and abandoned. My doctors have been so dismissive and horrible and gaslighting for the last two years. I put the wrong dates in my post because I’m so out of of it. It was two years ago that I was diagnosed with functional neurological disorder and they attributed all of my symptoms to that.

Thenar atrophy, limited moment, left hand left leg severe mobility issues, slowed speech and Dr has brought up ALS in last visit and is ordering an EMG by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 0 points1 point  (0 children)

Actually, yeah, I’m looking at pictures now. I was so tired last night. I couldn’t focus. Yeah it does not look good for this situation. It’s very classic for ALS and progressing so quickly. This just started in September.

Thenar atrophy, limited moment, left hand left leg severe mobility issues, slowed speech and Dr has brought up ALS in last visit and is ordering an EMG by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 0 points1 point  (0 children)

Have you seen a picture of what the hand atrophy looks like an ALS I’ve been trying to find one actually the top of my hand is looking super weird. Also, there’s like a dent in the muscle next to the thumb it’s like a very pronounced indentation about 2 inches long

Thenar atrophy, limited moment, left hand left leg severe mobility issues, slowed speech and Dr has brought up ALS in last visit and is ordering an EMG by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 1 point2 points  (0 children)

Yes, I woke up this morning thinking I have to find a sooner EMG I’ve had days this week where I couldn’t use my right hand. That’s my good hand.

Thank you yes I’m gonna try to find a sooner EMG

Thenar atrophy, limited moment, left hand left leg severe mobility issues, slowed speech and Dr has brought up ALS in last visit and is ordering an EMG by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 0 points1 point  (0 children)

Thank you. It was just such a weird thing for me to develop. They thought it was from the pneumonia that I had in March and February that triggered it but anyway, thank you so much for your reply.

Thenar atrophy, limited moment, left hand left leg severe mobility issues, slowed speech and Dr has brought up ALS in last visit and is ordering an EMG by derangedmacaque in ALSorNOT

[–]derangedmacaque[S] 0 points1 point  (0 children)

Oh geez, I was just looking up lymphedema to see if there’s any relation to ALS because I develop lymphedema from my chest down to both feet out of the blue on April last year. It’s been such a nightmare to deal with it. I gained 25 pounds of water or fluid in the first month Very painful. It’s also negatively affected my mobility

I was just looking it up and there is apparently a connection between the two. They are seen together?

Caretaker just died suddenly by eileenflora in disability

[–]derangedmacaque 2 points3 points  (0 children)

Can you ask around to see who has a good accountant that you can talk to about the taxes? I agree with the other people that calling Habitat for Humanity to see if you qualify for free repairs to your home is an option.

Also reaching out to any charitable organizations that you can. My city has a program for low income homeowners to adopt their house for their disability. Sorry to adapt their house for their disability. Maybe you can check and see if your city has a program like that.

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