Weird Stuff Going On

[AlwaysLivingSca]

Hey Everyone,

Just a little back story, I lost my Mom to Sporadic ALS about two months ago, I posted in here once before( 2 years ago) and have since stayed away.Im 31 and a diabetic, symptoms started at 29

About January 1 2018, I had a very weird Bicep spasm my whole bicep was going on off , this wasn't a twitch this was like my bicep wanted to escape , my arm was sore but I thought nothing of it, that night I went to sleep and woke up with pain shooting through my pinky and index finger, for the last two years this dull ache has not gone away every time I move my arm / hand / fingers this will not go away. I kept this from my mom , I didn't want to upset her and was trying to focus on her. Since then my Bicep muscle has gotten smaller than my left and the pain has moved into my pec/ and back of shoulder area, arm fatigues quickly, a lot of twitching as well.

Went and saw a neurologist who did an emg/ncs, everything was normal and suggested it might be Muskoskeletal , went to two different orthopedic doctors and they both found nothing wrong and suggested I see a neurologist

Went back to the same neurologist who did a whole body emg which came back normal again,I left relieved but my symptoms didn't go away

Now 18/19 months in I have the same weird feeling in my foot (Ive been checked for MS by the way, none of that) and I notice my foot not clear the ground sometimes when im walking.

Also my right hand is slower doing a finger tapping test

I'm not sure where I should go from here Ive seen a lot of people who have said they've had symptoms similar to mine when they started? I don't know if my first neurologist just sucked at doing EMGs? If theres another doctor I should see even though I think these are clearly neurological symptoms, and very similar to how my mom started

Any help of direction would be greatly appreciated, God Bless You All , Everyone here is Rad and Thanks in advance

 

[KarenNWendyn]

Please read this if you have not already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

You mention a number of sensory symptoms (pain) that point away from ALS. And two clean EMGs rule it out. In ALS, denervation is widespread and would not be missed by an EMG. So you don’t have ALS.

I’m sorry I can’t point you in a specific direction. Keep working with your doctors. Sometimes medications for neurogenic pain and/or physical therapy can be helpful, even in the absence of a specific diagnosis.

 

[lgelb]

Karen is right, of course, and also since you are a diabetic and diabetes can cause nerve pain, it's good to keep in touch with the physician managing your diabetes, stay up with any recommended self-testing and your meds, etc. And the right diet and exercise can have beneficial effects beyond managing your glucose levels.

Best,
Laurie

 

[AlwaysLivingSca]

I know pain isnt always a symptom of ALS, however my mom had a very atypical presentation which did involve pain for years before being diagnosed, she also had years of doctors not knowing what to do with her and numerous clean EMG's with minimal UMN symptoms, I have the read the stickies , however my personal experience with the disease didnt really match the symptoms and trends on the stickys, however the stickys did really relax me everytime I read them and definitely helped me calm down .

I do have pain but I have muscle atrophy going on aswell which really scares me and brought me here in the first place. The neuro suggested it could be stress , however I dont think stress would cause the atrophy, he also suggested diabetic amyotrophy, however that would have also shown up on an EMG, im starting to suspect this guy sucked at EMG/NCS and maybe I should seek a second opinion, Ive read cases where the needle had to be left in peoples muscles for extremly long periods of time to pick up activity

I appreciate any responses , everyone here is awesome, God Bless

 

[affected]

For sure go get a second opinion, we always recommend this is worthwhile.
We can't debate back and forth on your experience. A doctor who can examine you and order tests is the only one that can help.
I wish you all the best and am very sorry for your loss.

 

[AlwaysLivingSca]

So went and got a second opinion, the dude immediately saw the atrophy across my hand, bicep, and pec which is good, because ive been told by my other neuro for two years that im crazy, and I know theres something going on. He thinks since all the atrophy and weakness is around my right shoulder that it could be Parsonage Turner, but the previous clean EMG's dont support that, and the fact that its been continually getting worse since this whole thing began, he sent me out for an MRN of my Brachial Plexus, other neuro previously did a MRI of BP and found nothing. Just really scared right now, this seems too close to what my mom had

 

[KarenNWendyn]

Please reread my previous response to you. I still wouldn’t be worried about ALS.

 

[AlwaysLivingSca]

Thank You Karen, I truly appreciate it , you're my hero today

 

[affected]

Still not sounding at all like ALS. Another thing in your favour is you think it is familial because of the sad fact your mum had ALS. But you truly would not develop familial ALS just after she died. Obviously the new neuro saw atrophy, but didn't say you have or even might have ALS.
I hope you get some answers soon, but this isn't the place it will happen which is so great and I'm thrilled for you.

 

[AlwaysLivingSca]

Did anyone notice there muscles getting smaller or unable to flex before or does it just start with muscle failure and then atrophy? Sorry this whole thing is so weird for me , MRN today, Thank You Happy Thanksgiving

 

[KimT]

The reasons muscles atrophy is because they are not being used. Both my brother's legs are severely atrophied and he does not have ALS. He doesn't work out and only walks a little bit each day yet his legs are all bone. He has a hard time getting up because of the atrophy due to his lack of use.

When I sprained my right ankle (my good leg) I was unable to walk for 5-6 months. That leg atrophied severely, just like any leg would do with little or no use. Fortunately, it began to rebuild when I started walking again.

Neuromuscular specialists can tell by strength testing if your muscles are not working. If you can't push back and that muscle has atrophy, then that could cause concern. Just remember that other diseases and conditions can cause atrophy and weakness.

 

[AlwaysLivingSca]

Kim I go to the gym everyday , that's why im so concerned, ive also started getting a lot of spit pooling in my mouth this whole thing is weird

 

[KarenNWendyn]

Your history doesn’t suggest ALS at all, and you had a clean EMG, so you’re clear of ALS. I wish I had a clean EMG. Time to let this go. Please keep working with your doctors to find out what else you might have going on, but it’s not ALS.

 

[AlwaysLivingSca]

I’m really trying to Karen , I’m stumped and the doctors are stumped , everytime I start trying to figure this on my own I get brought back here , I truly appreciate yours and Kim’s kind responses , you both have saved me from losing my mind on multiple occasions , you’re great people , thank you

 

[Bestfriends14]

I'm sorry for the situation you are in, but it is absolutely no one on this forum's job to try and figure out what you have. You've had a clean clinical exam and an EMG, therefore, you no longer should be posting here, you should be working with your doctors. I will say it again- you no longer should be posting here, you should be working with your doctors.
Take care and goodbye.