would appreciate feedback/thoughts

[Kristina1]

Hello everyone, first of all thank you to anyone willing to read and respond. I'll preface by stating that I am female and only 31 years old, which I know makes ALS a very rare possibility.

Over the past year I have gradually developed painless, unexplained muscle weakness in my left hand (which is my dominant hand). It has gradually worsened. Along with the weakness I frequently get cramps in my hand, thumb, pinky, and ring finger, especially while trying to use the hand/finger muscles. The hand and fingers also feel stiff. When I went to my doctor about this she noted hyperreflexes, which was new for me (not something that I showed in previous exams in my life). I was referred to a hand clinic. After a comprehensive exam the hand specialist told me he felt I was looking at needing to see a neuro, and sent me for an EMG.

I have also hand other odd symptoms that until my EMG it had not occurred to me would be related, but the doctor asked about them. I have had problems with my mouth/throat area. I frequently choke on liquids and saliva (multiple times per day). I also get cramps in my throat, neck, and tongue. I have had voice changes- my voice goes nasal-sounding despite not being congested.

The doctor that did the EMG said the EMG ruled out any actual hand problem (like pinched nerve or tendonitis or whatever). He said the nerves weren't "firing as much as I like to see." I wasn't sure what that meant. He also said that the hyper reflexes were concerning. He told me he is ordering an MRI, some other tests, and sending me to a neurologist. I asked him how worried I should be and he hedged and then said "this is not nothing, you should be concerned and we need to dig deeper, but there are a lot of things that could potentially present this way."

When I got home I googled some (I know, Dr Google is never a good plan), and ALS came up and I noticed I had another symptom on the list as well that has also gradually developed over the same time period as my other symptoms. And that is inappropriate & uncontrollable laughter.

So now I'm feeling quite worried and wondering if I legitimately should be.

Any thoughts?

 

[Nikki J]

Hi
Honestly, I would be concerned but not panicked. The doctor who did the EMG was not the oredering doctor? The ordering doctor should give you more information and I would want to know the emg results ( and have a copy of the report) and I would ask what is on the list for possible diagnoses.

Also it sounds like you have not seen any neuro yet , let alone an ALS specialist and even IF this person is thinking ALS there are lots of other things to look at. Plus, non ALS specialists can definitely be mistaken. Just this week we had someone, diagnosed by a non ALS neuro, have their diagnosis overturned by the ALS doctor

Try to take a deep breath and call first thing in the am. Be firm you need some information before the weekend. Let us know

 

[Kristina1]

Hi Nikki, thanks for your reply. The doctor that ordered the EMG was am upper extremity specialist (orthopedics I think?). The doctor that did the EMG was a neuro-physiology specialist and when I came in for the appointment he kind of took over my case. He said the EMG ruled out a hand issue, so there was nothing the hand specialist could do for me. He told me he was ordering the MRI, other tests, and booking me with a neurologist. He said his assistant would call me tomorrow with those appointments. It was a little confusing because I then asked him if I should keep my follow up with the first doctor (the one who first ordered the EMG) and he said to call them and ask but that I probably did not need to since I would be getting referred out of the hand clinic to neurology.

 

[Kristina1]

Also Nikki, I just noticed you are in Boston. I was seen at the U Mass Hand Clinic in Worcester.

 

[Nikki J]

U Mass has great doctors. Try to get the EMG report. I hope you don't need it but the ALS clinic there is excellent. If I did not go to MGH I would go there

Please let us know what they tell you tomorrow

 

[Kristina1]

Thanks again Nikki. I know they can't just email me the report so I would need to pick it up in person and I don't think I have time to make it over there today anyway. So I think what I'm going to do is keep my follow up visit with the hand specialist, which is Monday morning at 8am. I will ask him to give me a copy of the report and to confirm the next steps that the other doctor initiated (if I haven't received the phone call yet with the MRI and other appointments).

I'll update Monday.

 

[Kristina1]

Re: New findings

It is hard to explain to someone who has not experienced it. Even I, a FALS family member, was surprised. A muscle does fail suddenly but the thing is most of the time other muscles compensate so you can still function but there is one little thing that the affected muscle is responsible for that just does not work. You don't feel weak but suddenly you can't do something. My sister could not do a button but otherwise her hand was ok. Function gradually worsened as more muscles dropped out. My thing was I could not step sideways without falling over on one side because the holding up muscle went first. I could still walk And even run but I could not do a simple side step. I have lost a number of muscles in my leg now so there are more things I can't do and that has happened over time but each loss of function occurred suddenly. My quad examined fine in the neuro office and three weeks later it failed ( by my perception as I fell ). My next exam showed clinical weakness there so I think I was correct

Sorry to hijack, this is not my thread, but I was wondering if I could jump on and ask a question about this. As you know I am waiting to get a copy of my EMG report Monday, and my MRIs have been scheduled for next Thursday. But as I'm waiting I'm wondering when you mention other muscles compensating if my hand weakness sounds like that's what's going on. There are a number of every day things that have gotten harder for me but which I can still do- such as using my grip to open a bag of of chips or turn a door knob or unscrew a lid. But there are other movements I can't do at all. I can't use nailclippers anymore (the compression is too hard, I can squeeze some, but not enough to cut the nail). I can no longer cross my fingers. When I have a closed fist, I can no longer lift my pinky to isolate it. Yet I can move my pinky when opening my whole hand with all my fingers. If I lay my hands palm down on the table and lift each finger one at a time, as if to type or play piano, I cannot lift my pinky more than a few millimeters, and I cannot lift my ring finger at all (it won't even budge). It doesn't hurt, it just doesn't move. From a closed fist I am also unable to completely straighten my pointer finger, though I can lift it 80% of the way. Yet I can open and close my fingers all together as long as I'm using all of them (as opposed to trying to isolate one of them).

They also, along with my whole hand, feel stiff all the time, and it is easier to keep them in a fist than to have my hand open. Yet there is no pain at all.

I know I need to wait until the rest of the tests have been done and I've seen the neuro they are referring me to. But I was wondering if this sounds familiar or if it sounds like something unrelated to ALS.

 

[ShiftKicker]

Mod note- I have moved this post to your original thread to make sure your posting history and questions are all in one place.

 

[Atsugi]

Kristina, people who are not diagnosed with ALS are asked to stay in their own thread.

After reading your posts, I agree with Nikki that you have something going on, but it might be simple. Your description could possibly be something bad, but the pure odds of ALS are low. Let the doctors investigate. They'll look at the more common conditions first, then rule out the rare diseases.

 

[Kristina1]

Kristina, people who are not diagnosed with ALS are asked to stay in their own thread.

After reading your posts, I agree with Nikki that you have something going on, but it might be simple. Your description could possibly be something bad, but the pure odds of ALS are low. Let the doctors investigate. They'll look at the more common conditions first, then rule out the rare diseases.

Apologies! I did not mean to overstep.

Thank you for your response. I keep reminding myself that as a 31 year old female the odds are low. It is just difficult being told "this is not nothing, you should be concerned, we need to dig deeper" and then being left in limbo. The doctors won't speculate as to diagnosis yet, and I completely understand why, but at the same time wish they would so I could get a better sense of things.

 

[Nikki J]

Did you get your appointments? Did you check and see what the neuro specializes in?

I don't know the details of my sister's hand progression ( we lived in different states). there are as you say still lots of tests to do

Btw did you get an emg of anything other than the affected arm?

 

[Kristina1]

Did you get your appointments? Did you check and see what the neuro specializes in?

I don't know the details of my sister's hand progression ( we lived in different states). there are as you say still lots of tests to do

Btw did you get an emg of anything other than the affected arm?

Okay, makes sense.

The doctor's assistant called with the MRI appointment (it's set for thursday 2/2/17). He had said they would make me a neuro appointment but I haven't gotten that call yet. I'm going to check on that when I go in for my follow up Monday morning.

The EMG was mostly on the affected (left) hand and left arm. He did a shorter version on my right hand and arm, I'm guessing to compare. He did not do other parts of my body.

 

[Atsugi]

... It is just difficult being told "this is not nothing, you should be concerned, we need to dig deeper" and then being left in limbo. The doctors won't speculate as to diagnosis yet, and I completely understand why, but at the same time wish they would so I could get a better sense of things.

I know waiting is difficult and the mind thinks the worst. Here's my story (first, know that I don't have ALS). A couple months ago, a really smart old doctor took one look at me and said, "You need to go see your doctor. This is serious. You don't look right at all." Then I noticed some discolored skin and looked it up on Google. It looked just like incurable cancer. I was going to die within a year or two. I was sitting in a restaurant when I began to think of my kids having no parents and I burst into ugly tears in public.

After several specialists performed really expensive tests on me with big machines, the verdict finally came in. My doctor told me I was fat and lazy and needed to get some exercise! Boy, did I feel stupid.


As they say in medicine, when you hear hoofbeats, think horses, not zebras.

 

[Kristina1]

As they say in medicine, when you hear hoofbeats, think horses, not zebras.

Thanks. I do get it. I have a son with severe autism and several comorbid diagnoses. I'm on a support group forum for parents of children with autism, and we often get people that wander on and start a post in a panic because they think their 3 month old might be Autistic (impossible to tell at that age).

Thanks for your patience and I do hope my post is not as eye-roll worthy as some of the ones we see on our autism forum.

 

[Nikki J]

I am thinking that he did not EMG either leg or the bulbar area is slightly encouraging. Usually when they find something that looks like ALS they look for it in other areas. Sometimes the EMG doctor is limited by what the original doctor ordered but this one could order an mri and a neuro consult so one would think he could expand the EMG as indicated.

Let us know after Monday's appointment. And no eye rolling by me!