Just wanting to rule out this dx prior to neurology appt :)

[slanbam7]

I haven't had the neuro appt yet (I think it's week after next), but just wanted to update symptoms one more time before the appt. Please don't feel the need to respond

Each morning I go up on my heels and toes, and move my left hand and fingers around. There hasn't been any change at all in those 3 limbs. I do have minor, intermittent twitching in them, but with no weakness I assume this is normal and probably twitched before any of this. Definitely not the same level of twitching/cramping I experience in my right arm and hand.

New things that I've noticed in the past 2 weeks:

• Putting my hand in my pants pocket causes my fingers curl up and jam at the top of the pocket.
• When I put on gloves, my fingers curl and I have to use my left hand to put them in the correct spots (like trying to put gloves on a toddler ).
• I haven't bothered to fix my hair in months- I just put it up in a bun/pony while it's still wet... but now when I try to run my fingers through the head/scalp part of my hair to put it up, they curl and won't "push" the hair back.
• I have still been writing with my right hand- I can hold the pen in my hand with a fist and write that way. However in the past week when I've been trying to take notes during meetings at work, my hand cramps super bad, both in the thumb pad (or whatever it's called) and the muscles on the palm/side below my pinky finger. It will cramp like a charley horse for what seems like hours but probably like 2-3 minutes and then I can slowly work my hand open again with my left hand.
• I typically only use my index and middle finger to type on my right hand because the ring finger and pinky don't have the strength to press keys on the keyboard. But now, when I type with those 2 fingers, the ring finger and pinky stiffen up and get stuck in a half bent position and end up pressing keys by accident (but of course I don't have enough control for them to hit the CORRECT keys when they're stiff )
• The atropy in my hand is definitely getting more noticeable.

Otherwise I would say things are about the same! It's now been at least 9 months since I first noticed weakness in my hand. Even though the finger/hand/forearm symptoms continue to progress, I have no other symptoms pointing to a MND. I personally feel the likelihood of this being the diagnosis is decreasing. So that's where I'm at 2 weeks since the last update and 2 weeks before seeing the neurologist. I'll check back in after the appointment!

 

[slanbam7]

Had the appointment with a neurologist today (the one who performed the EMG in December). He looked at the mri results of my cervical spine, brachial plexus, and wrist, which were all normal, and then did the typical neuro exams. He left to consult with another dr and came back and said he's not sure what else could be going on other than a problem with the motor nerves. My husband said, "I'm just going to come out and ask, is there a chance this could be ALS?" and he said, "Yes." Good news is that he talked to a couple other doctors and called me back this afternoon with orders for blood tests and a genetic test (I was adopted so I don't even have a lot of basic genetic information) and a few minutes later I got a text confirming an appointment with an ALS specialist next Monday the 17th. So they're moving quickly which is great.

 

[slanbam7]

Going in for an EMG of my right arm, left arm, and right leg today with a specialist. I've had some consistent twitching in my left arm and mild cramping in that forearm, but I use my left hand and arm for almost everything now, so I have been telling myself this is the reason. I've had a few EMG's in the past prior to this and then the EMG in my right arm in December and each time the doctors have pretty much narrated as they went. I really hope she does this today, and I'm staying super hopeful that the left arm and right leg will be "clean" and then I will feel so much more comfortable waiting for the results of the bloodwork and genetic testing at the follow-up appointment on the 26th!

 

[Nikki J]

Good luck.

 

[slanbam7]

Not the best news. He ended up doing right arm, right leg and back. His specialty is Motor Neuton Disease, but he sent a stat referral to the IU ALS Clinic (I live in Indianapolis). Report attached.

 

[Nikki J]

I am so sorry . I hope IU has a different idea and that you get there soon.

I encourage you to review both the getting a diagnosis sticky in this subforum and also the second opinion sticky in resources under the general discussion subforum. The more prepared you are for the next appointment the more you will get out of it. It is so easy to get overwhelmed and forget to say or ask something. If you have someone appropriate to go with for notetaking and second pair of ears it is helpful.

Let us know if you have questions in the meantime and do let us know when you find out when your appointment is

 

[slanbam7]

It's been a little over a month since I visited/commented here. After the last EMG (3/17), the neuro added the diagnosis of "Motor Neuron Disease". I then had an appointment with a third neurologist in the same office (they were continuing to see me while waiting for IU) on 3/26. I went in with all the reasons that I think it could be something other than ALS, but he agreed with the other two neurologists that this is the likely diagnosis. He personally called the head of the IU ALS Center to ask why I didn't have an appointment yet and within an hour I had a virtual new patient visit for April 11.

Obviously there wasn't a lot the IU neuro could do virtually, but he asked lots of questions and allowed me to ask questions. I have a 4 level EMG & clinic visit with him scheduled for April 30.

I'm not in denial, but not yet ready to accept the diagnosis. The symptoms are still only in one hand/arm as they have been for nearly a year. I know we are not allowed to post pictures, but my right hand is basically a skeleton, I'm unable to straighten any fingers and I can't move them separate from one another at all now. I KNOW this is classic ALS, but it seems hard to believe that one limb would progress THIS far without any symptoms at all anywhere else. Even the twitching is mainly only in my right arm from shoulder to fingers. Also, I'm fairly certain I've always had super brisk reflexes in my knees because I can remember doctors jumping back and making funny comments about it since I was a kid.

Anyway, I'm just living life more than ever and taking each day as it comes! I was even able to sneak in a quick trip to San Francisco with two of my boys who are in high school and don't spend as much time with their old mom anymore I haven't said anything at all to the kids and even if this next EMG shows more widespread damage, I am waiting until school is out for the summer. No reason to drop the news on them at the end of the year. But regardless, life is short and I have started living like it's the end, whether I have a year or 50 years left!

First attachment is a screenshot from the notes after the 3/17 EMG
Second & third are notes after the 3/26 appointment

 

[Nikki J]

I am sorry again. It is possible to have Very slowly progressive ALS. I have a friend who is 17 years ( maybe a little more?) with symptoms confined to one leg. The leg is pretty bad now. It is ALS though confirmed by experts and it is also documented genetic.

There is also a form that stays confined to arms though usually found in young Asian males

 

[slanbam7]

Thank you, Nikki