Split hand sign in left hand. Positive EMG. Not yet diagnosed.

[Labath2017]

Hi. I'm new here and am in the process of getting some sort of diagnosis. I've been having weakness of my left hand / arm since Oct. I'm dropping things , can't button my clothes, can't pick things up that are small. I'm having cramps that pull my finger towards my hand until they subside. My EMG 2 weeks ago was positive and my neurologist stated that I hand "split hand". My muscles are atrophied throughout my whole arm. I understand that this could be ALS. My question is, have you heard of this happening in something other than ALS? Thanks so much.

 

[Nikki J]

I am sorry to hear this. Split hand is not always ALS However if you have atrophy clinical weakness and a “ positive emg” ( feel free to post the deidentified report) it does narrow the differential a lot.

Why aren’t you diagnosed? Are there other tests ordered? Or are you being sent for a neuromuscular specialist opinion? Even if there are other tests in the works I would be looking for that second opinion at an ALS clinic especially if this neurologist is not a neuromuscular.

Again sorry that you are dealing with this.

 

[Labath2017]

Thank you for responding Nikki. I had my EMG, net conduction study and EEG first. He sent me for two MRIs , cervical spine to rule out a pinched nerve and one of my brain. On my first visit the appointment for follow up is March 20th. I called for the results of the MRIs and the nurse told me that I did not have a pinched nerve and that I just had some arthritis , so the pinched nerve is ruled out. She said we'd discuss things further at the next visit. He gave me the EMG results verbally and also told me about the atrophy in my hand and arm. He mentioned to the nurse and me split hand sign. Now im impatiently waiting my next visit.

 

[Nikki J]

You should be able to see the emg on the patient portal. You really should start working on a second opinion because it can take a while to get seen Sorry about the mri

 

[Labath2017]

I appreciate you responding. I just checked my neurologist's site and he does not provide a patient portal. I'm going to call my pcp who referred me on Monday and ask if she will refer me for a second opinion. I have called 3 times last week. Left 3 messages on the nurse line and have not gotten a return phone call. He is the only neurologist in this practice. I'm frustrated and March 20th is a long way off when something is on your mind. The other thing is since she referred me to him she can probably have the results sent to her. This whole thing makes me feel so alone. I don't share my symptoms with people except my husband and he feels as if I'm imagining things as far as my symptoms.

 

[Nikki J]

It is law that results be available to patients in a timely manner. I am surprised a doctor doesn’t have a portal. Is he in solo practice or affiliated however loosely with a big group ?. My old pcp had her own practice but she was administratively affiliated with a big group and used their portal.

When you get test results get copies and keep them in a folder. A second opinion will probably want to see your mri images.

At this point as I said you probably need an als specialist so don’t have your second opinion with another general neurologist. You will have to travel a bit. I know musc has an als clinic and there may be others

If this is ALS we will certainly try to support you This is a handy website for basics if you are diagnosed Your ALS Guide – Your guide to living with ALS

Are you left handed? If so do signature stamps asap. If you are right handed do it if diagnosed. I did my full name but also Nikki and love, Nikki. If you sign mom or Grammy or whatever to some loved ones do that too

 

[Labath2017]

I called my pcp yesterday and she is having the results faxed to her office. This neurologist that I'm seeing is by himself. I have left 2 more messages on his nurse line. It's interesting you mentioned MUSC. This particular neurologist has privledges there. I even checked their portal. The other thing is my mri was done at a facility that is also independent. I'm guessing the mri will mist likely be normal. What is my next step? I have a follow up appointment to " go over results" which was made at my first visit prior to any tests. I'm frustrated.
I want to mention to you, I don't think I had said that along with the weakness and atrophy , I'm having pain in my left shoulder and arm and also numbness and tingling. Is this unusual?
Thank you for reaching out Nikki! As soon as I know anything I will be sure to let you know. Maybe I will today.

 

[Nikki J]

Having privileges does not necessarily mean they are part of the ALS clinic

Yes pain numbness and tingling are unusual on early ALS. Have you had the pain right along? You might need a shoulder mri as there are syndromes that present as shoulder pain

Hopefully your pcp can get more information

 

[Labath2017]

You're right he's definitely not affiliated with any ALS clinic.
This all started with the hand weakness and difficulty grasping which is continuing to get worse. The arm pain started a little bit later. The numbness and tingling also came after the weakness.
I was thinking the same thing as far as shoulder imaging. So far they've only done the shoulder x ray and c spine mri and brain mri.
You are so kind responding to me. I will definitely let you know. Thank you.
Is this always a long process, finding a diagnosis. My biggest concern that makes me keep going back to ALS is the split hand syndrome. I have to continue to be patient.

 

[Labath2017]

I thought of one more thing that you might have some insight with. I get bad cramps in my forearm, during the cramps my fingers curl and I can't move them until it's over. My tricep also twitches a lot. I'm sorry I'm all over the place. I have nobody I want to confide in and my husband thinks I'm making it up. Why would anyone make this up? I'm very healthy , don't complain and I've never had anything like this before. You've been very helpful, especially in keeping me grounded.

 

[Labath2017]

After multiple attempts in trying to contact my neurologists with no luck, I called my pcp and asked her to get the results of my tests and my records. She called me today and said ,"I'm sorry to tell you this , you have a neuromuscular degenerative disorder." She said that they don't know which one, that I needed to talk to my neurologist about treatment options. They put in a referral for a second neurology consult. I know this could be a lot of things, nevertheless I'm scared. I have my BSN so I do have some medical knowledge but when it comes to figuring things out concerning my husband and myself I feel like I know nothing. Right now I'm not sure what to do next. It seems like I'm having more symptoms every couple of weeks. Can you guide me in any way?
Thank you.

 

[Nikki J]

Again make sure this second neuro is a neuromuscular specialist. Neuromuscular degenerative disorder is broad and given you had an emg it seems like they could have given you more information. I wonder if they are not telling the whole story and passing the buck to the neurologist Of course the neurologist should be one telling you results but they are not answering. I am sorry this is clearly frustrating and frightening

 

[Nikki J]

Another thought. Did you have an nfl blood test? That is a test that shows neurodegeneration but is non specific for which disease. It can also be because of an acute head injury. In that case it resolved. I wonder if you did have the nfl if that is all your pcp saw in your record?

 

[Labath2017]

No I haven't had the nfl as far as I know. I called my neurologist Friday and asked why my pcp told me that I had a neuromuscular degenerative disorder and asked why they hadn't informed me. The nurse stated that they will see me sooner than previously scheduled.it upsets me that I was given that information over the phone with no explanation.
As more symptoms develop I feel like something else is going on rather than ALS. Ive developed numbness and tingling in my thighs , back and chest which I know isn't the norm for ALS. My legs are shaky and weak. I'm not looking for answers from you all,I know you don't have them.
When I get my results from my tests and after I see my neurologist is will be back with more information. I appreciate you responding to me. You guys are wonderful on here and help so many people. Thank you.
You will here from me as soon as I know more

 

[rmt]

The neurologist (or PCP) should be able to tell you why they think you have a Degenerative neuromuscular disorder. The reasoning should be in the conclusion of the chart notes. I think they are required to give you the notes and results. I would call and push for that information. And then I would find a different neuromuscular specialist to go to for a second opinion. Your current neurologist doesn't sound very thoughtful or resonsive.