ALS or keep looking for other answers 🤔

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Krzybnme

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Hello everyone!
Let me start out by saying thank you for this forum and for everyone that is giving their time to people like me. Thank you!

I came across this forum after searching for information on ALS on the web. I found that I was able to get more information here than any where else. So here we go.....I’m a 57 years old female.

I started having issues with my right middle finger about eight months ago. The basic thing that I noticed is I was unable to lift it to type. As the weeks went by I thought it was spine related because I’ve had 2 neck surgeries. I definitely felt like it was related to C7 T-1 irritating the C8 nerve root which would effect that finger. By the time I got to the neurosurgeon it had affected not only the middle finger, but ring finger and pinky finger. With complete hand weakness. I cannot do things that I normally could do like stretch a scrunchy, type, use a mouse, comb my hair, and so many other simple tasks. It doesn’t hurt, it has atrophied and I can’t make my hand to work anymore. When I went to the neurosurgeon he did a physical exam on me and said that he was extremely worried about the the weakness in my hand and that he wanted to send me to get a nerve study done.

I went and had the nerve study done and was also scheduled to have neck surgery a couple weeks later. My EMG said that I have multifocal motor neuropathy or motor neuron disease. Then the doctor asked me if I knew what Lou Gehrig’s disease was. That he felt that was what I have. At that point I still had to do surgery and the neurosurgeon felt confident he could fix my hand. Since then I’ve had the surgery and I still can’t use my hand. I’m a little stronger but with simple tasks I’m still unable to complete. The neurologist that did the EMG said he wanted me to come back, so now I’m scheduled to go back and talk to him on Wednesday, January 12th. I have all over body twitching and it feels like my tongue is too big for my mouth. (Pronunciation trouble). The thing that bothers me the most is I just feel out of it a lot of time. I can’t think as clearly as I could and can’t use or remember the correct words. I’ve also been really emotional 😭 and a feeling that things are not right inside me.

Any help with the following questions would be appreciated

They want to do a brain MRI, but am not sure how that would indicate ALS?

I read that the EMG is the best indicator for ALS ?

I don’t know if I was fully diagnosed or not. I don’t know if my symptoms are ALS symptoms or no. Any thoughts?

I really don’t have anyone to talk about it to, because my family was upset at the neurologist for saying I had ALS and refuse to believe that its true.

If the things that I’ve mentioned here are not ALS, then praise God. I don’t wanna borrow trouble from tomorrow. But I’m kind of looking for an honest answer, and need to ask the right questions on Weds

Sorry for the length of my post, Thank you for your time😏
 

lgelb

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I'm sorry that you're going through this, Kansas. Your account is confusing to me. If the differential were multifocal motor neuropathy (MMN) vs. ALS, and everything else were excluded, typically IVIG would be tried to rule out the MMN. An MRI would be done before picking either ALS or MMN as a place to start, and normally a spine study would have been done before your hand surgery.

But an MRI in itself doesn't point to ALS. It's to eliminate other possibilities. Your EMG, clinical exams, and history are the most important aspects in that diagnosis.

You should be seen at a neuromuscular center, Where is your followup? You are in the middle of several options, such as in Wichita, Kansas City, Albuquerque, Denver, or Oklahoma City. Here is a map of centers.

If you can post the EMG tables and report with your details blacked out, we could be more helpful.

Best,
Laurie
 

Krzybnme

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Hi Laurie,

Thank you for responding so quickly. I will attach the EMG. I appreciate the help in deciphering the information in the report. I will get the other pages to you later today. Hopefully you reading it yourself will clear up the confusion. All this is just so new to me, I so appreciate the input.
I need to correct a misunderstanding real quick. The surgery I just had was again in my neck
(this now totals 3X) it was not in my hand. The neurosurgeon believed that the nerve root was causing my hand the trouble. At the time of discharge then told me to contact the neurologist who did my EMG for follow up tests.
I have been going to the Amarillo area for my appointments thus far. I still don’t think that I’ve been diagnosed yet. The neurologist was just leaning towards ALS. Do the symptoms I’ve listed sound consistent with ALS? I know that I will get more information on Weds but would appreciate your input sooner.

Again, thank you,

Kansas ☺️
 

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Nikki J

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Hi
your symptoms are concerning yes Aside from the MrI there are usually lots of blood tests looking for mimics I gather you did have spine imaging recently?

as Laurie said if the differential is still ALS vs MMN then an ivig trial would be indicated. If this neurologist is not an ALS specialist at a clinic I would start looking for one

it will be helpful when you are able to post the emg tables. The summary is concerning but not specific on what the exact findings were
 
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