ALS like symptoms for the last two years & I am absolutely desperate for help & any input.

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Meowwethy

New member
Joined
Oct 15, 2023
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5
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NY
City
NYC
Hi guys. To begin, thank you so much for giving me a space to discuss my concerns. This was truly my last resort as I don’t find it fair to post without an official diagnosis but at the same time, I continue to be neglected thrown around by my medical providers so I have no where else to turn. So thank you for your time & willingness to help me.

It all started in December ‘21. I was sitting in class when I felt muscle twitches breakout on my back but I didn’t know what they were I actually thought I was imagining them. They persisted and by February ‘22, they were full bodywide muscle twitches. At that same moment in Feb ‘22, I broke out with myoclonic jerks- i would have jerks/ tics SO severe (every few seconds as I tried falling asleep) that I was literally unable to sleep no matter how many Benadryls I took, etc. I wound up going to the hospital after being stuck awake nearly three nights in a row. I also started experiencing terrible internal vibrations throughout my body and into my head, that’s the best way I can describe them. I would wake up to myself experiencing them, thinking I was seizing or something. I then broke out with terrible vertigo which impaired my ability to drive.

By the end of Feb ‘22 I saw my first neurologist. He did an EEG on me (came back clean) and ordered brain MRI and full spinal MRI (cervical, thoracic, lumbar). Brain came back clean but my entire spine was full of arthritis/ herniated discs, stenosis, etc. He also did an EMG which showed chronic denervation is six muscles, three in each arm at the C5-C6 level. He said since I had a herniated disc and stenosis there that it was considered a chronic bilateral radiculopathy. He blamed every single one of my neuro symptoms, especially the twitching, on my spine. Also please note that I had noticed slight muscle atrophy in both of my arms/ biceps at this time but he said that was due to the pinched nerve at c5-c6. He also did a TM Flow test which showed small fiber inflammation (I’m assuming this means SFN) in my left foot.

He insisted the abnormal emg didn’t indicate als but I got nervous with all of my twitches so I went for a second opinion at an als specialist in Hackensack, NJ. I kid you not, after just two sentences of me speaking he said “well it could be als you know right?”. That frightened me because I thought als was an exclusion diagnosis/ he said this without even looking at my EMG, so I didn’t go back.

By July ‘22, all of these symptoms were still present but the bodywide twitches were intensifying and specifically getting their absolutel worst in my left thigh. I then started getting muscle pain/ aches in my left calf. By the end of the summer my entire left extremity started wasting away. By January ‘23 my entire left extremity looked and felt half the size of my right- with even my left butt cheek showing a massive dent inwards, so I decided to go back to my first neurologist. I explained to him that my left extremity was atrophying and that it came with muscular pain/ bodywide twitches still. So he decided to repeat the EMG- this is now a year apart from the first one. This time, my left arm came back completely clean (which makes it seem like it improved) but my right arm still showed denervation at the original three c5-c6 muscles plus one of the muscles at c6-c7. This didn’t make any sense because I do not have herniated discs at c6-c7. Shockingly, my entire left extremity came back clean as well, even though he noted moderate atrophy throughout it. Again he blamed everything on my spine issues.

I went on to see a neuromuscular specialist due to all the atrophy and twitches, but he wasn’t the most sane doctor I’ve ever been to and it’s too long to get into. But I’ll shed some light on how horrible it went by letting you know he told me “I’m 96% positive whatever you have is not curable or treatable so it’s not worth diagnosing.”

I then went to a neurosurgeon since my original neuro continues to blame every last symptom on my spine. The neurosurgeon had me sit down and look at my spine images with him. He said my spine is rather healthy and that there’s zero chance my spine is causing and of these problems. He said he agreed with the one neuro I went to to that it could be als…he said it could be als or another neuromuscular disease.

My atrophied leg is now becoming weak after all this time. In fact yesterday I was nearly positive it was going to stop working all together. It is getting increasingly hard to use it and it continues to atrophy. Worst part is, now my entire right extremity has that muscle pain/ aches throughout it in random patches- so I worry that atrophy is finally starting there since that’s what happened with my left. Twitches (which have never stopped since Dec ‘21), pain, then atrophy.

So as you can see, I ended up here because I can’t get a real diagnosis from ANY of my doctors. I am just sincerely begging at this point for any and all help that you can offer. My prayers are with you all throughout this awful illness. I thank you all for reading this long dreadful story. All my best!
 
Meowwethy, you have numerous symptoms, numerous Neurologist visits,
numerous possible determinations and a hospital stay in your rather lengthy
post.

No one here will tell you... "Yes, it looks like ALS." I also doubt anyone
here will attempt to disagree with Highly Trained and Highly
Educated Neurologists.

You wrote you were sitting in class when you first noticed twitches...
how old are you? That will help people here who may reply.
 
Not seeing ALS here, but am seeing a lot of anxiety and frustration that will make it more difficult for anyone (including you and your docs) to separate anything treatable from what's not. I suspect that has led to some difficult conversations as you relate.

The facts we have: you have some spine damage on MRI and EMG. That they don't match up perfectly is not unusual; they're different tests -- think of taking a picture of an object from different angles.

For people with ALS, areas of atrophy and weakness pretty much match up at some point. When you don't have ALS, though, they don't, necessarily.

Normally, if someone has radiculopathy and it's causing problems for them, they start with PT. You don't mention that, but I would certainly ask any of your docs for a referral.

Also normally, if someone has the anxiety that you do about all this, we advise them to seek counseling (1) to feel better and get an objective view of things and (2) work on that process of separating wheat from chaff. You don't mention that either.

Finally, if someone has problems getting to/staying asleep due to limb movements, typically a sleep study to look at possible apnea and movement disorders is recommended. Any neuro or PCP can order one, and they can be done at home with a simple sensor, basically a more sophisticated smart watch.

So those are my three suggested things to do. Again, you've reported no reason to worry about ALS.

By the same token, however you feel about the brusqueness and off the cuff statements you've had from docs, don't let that become the focus of your life. If you hold onto the past, you're giving up the future.
 
Hi, thank you so much for your reply! I failed to mention that I have done a sleep study (came back clean) and I did do PT for four months, however, my entire left lower extremity continued to atrophy despite my dedication to it. More than anything I just need to search for answers because I am at the point of potentially losing the ability to use my left leg if I can’t find the reason for its continuous atrophy. My first neurologist, my primary care, and my neurosurgeon all gave noted the atrophy so it’s certainly not something I’m manifesting in my own head because of anxiety. The neurosurgeon, who I saw less than a month ago, seemed very confident that it was als or another neuromuscular disorder when he first said it to me. He tried to refer me to a neuromuscular specialist but he said he’s never had to do that before so he didn’t even have any resources to give to me. So unfortunately this isn’t all just anxiety, though I wish it were. I am a 32 year old ER Nurse so I am usually level headed even with my own health issues. I don’t want to not fight for myself or answers and just give up on my left leg all together without ever knowing why it’s dying :/
 
If you are dissatisfied with your current doctors get another one. If you are really in NYC go to Columbia. Some people don’t like their ALS clinic but they are great diagnosticians. Since your neurosurgeon is willing to refer ask him.
 
Hello, I tried calling Columbia yesterday and they do not take my insurance. John Hopkins is in Maryland and it will probably take me some time to get all the doctors notes/ tests they need me to submit and even after that they said it can take 3-4 weeks to review my case to decide if they even want to see me.

Like I’ve stated, I have myoclonic jerks as I drift off to sleep, body wide muscle twitches, on and off vertigo, muscle pain in random parts of my body, and muscle atrophy in both of my arms and my entire left lower extremity. It’s not my spine according to the neurosurgeon. Yes my EMG came back clean in my legs but it came back with denervation in my arms. The only reason I resorted to this forum is because my left leg is now becoming really weak (started a few days ago whereas the other symptoms have been present nearly 2 years). It is heavy and feels so damn hard to use. I am trying to find doctors that will help me, but I was hoping to get your thoughts on this too. Please, if you can let me know what you think. Ty so much
 
I don’t think it is ALS since you asked for thoughts.

When you have a medical issue you should always keep a file of your notes and results. They should also be available on patient portals so you can download. Also if your providers use epic you can easily share to other epic users and also can grant access to non epic users. One way or another you should be able to get all the paperwork together quickly. Temple or UPenn would be other options presumably closer than Hopkins.

You also need to be prepared for the fact that ALS clinics don’t always take everyone. I know mine doesn’t though I think they offer an appointment elsewhere in their neurology department. I honestly don’t understand how they decide as they seem to take some people who pretty clearly don’t have ALS
 
Thank you Nikki, for your response. It is dearly valued in a time like this with so, so much uncertainty. I feel like I am on the verge of disability, but without a diagnosis I won’t be able to get the help I need, so that is the only reason I keep picking and prodding. I am a nurse and I also have rheumatoid arthritis so believe me when I say I am trying to be my most rational about this. It’s not just coming from a place of health anxiety but rather genuine concern (for example, when I had RA I KNEW I had it, but they misdiagnosed me for six months straight. And this time I know I have something, but it keeps getting missed). With the relentless atrophy and twitches, you can see why it finally led me to believe that okay, maybe the other two doctors are right, maybe it is ALS. And if so, I’d like to start available treatments right away. Anyway, this is the reason I was seeking your thoughts on this forum. I appreciate your input so much from the bottom of my heart and every one of you is in my prayers. Best wishes to you always
 
Hi Meowwethy,

It's certainly reassuring that your EMG was normal in your left leg, despite the ongoing weakness/atrophy. The abnormalities in your arms is, according to one neurologist, due to your spine.

You mentioned that the neurosurgeon who believes the cause isn't your spine, and is a neuromuscular disorder, has never had to make a referral to a neuromuscular specialist? That feels... surprising to me.

If you are losing muscle and are weak, and your EMGs are clean, I'd look towards issues you already know you have. Is your RA well-controlled? Because apparently 2/3 people with uncontrolled RA experience muscle wasting.
 
Meowethy, You being a 32 year old ER Nurse, apparent considerable medical
knowledge, just might be working against your thought processing.

Saying that... you know most than others know the level of medical knowledge
a Neurologist has. I know a woman who studied very hard to become a PA.
Who'd guess this part... she couldn't pass the math part. The math part !!
She did end up getting a very good job/career with a health company.

What in the world... is math such a critical component of becoming a PA?

Work with your doctors, hope it doesn't drag on much longer.
 
Hi AnxiousStatsGuy,

Yes according to my original neurologist the atrophy is due to my spine despite a normal lower EMG showing no Radiculopathy. I have not been able to see him since the weakness began a few weeks back.

The neurosurgeon, who operates on spines for a living for this very reason (when spinal issues cause neurologic or neuromuscular issues), insisted that my problems are in no way related to my spine. However, the only reason he didn’t make a neuromuscular specialist referral is because he had trouble finding one for me to see in my area. He said he has never had to make a referral for an ALS specialist or neuromuscular specialist before, so as he attempted to Google them, he did not come across any. I told him not to worry, that I already anticipated this/ did my own research and have an upcoming appoint in November. That’s the only reason he didn’t make one.

Also, the type of muscle weakness you are talking about in RA is Rheumatoid Cachexia, which is a generalized muscle mass loss type of condition. It is not muscle fasiculations with unevenly spread muscle atrophy, more pronounced in certain areas of atrophy, leading to weakness. Although, I sure wish it was just rheumatoid cachexia (whatever I have).

Thank you for taking the time to respond to me!!
 
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