Could this be?

[miejajoy]

Hi All,

I posted about a year ago when I was very unwell and here I am again. I will try and link that post. I have resisted reaching out for a while now but now feel desperate. Last year at this time this was my status:

• Right hand weakness, throat and tongue weakness, excess saliva, uncomfortable nerve sensations throughout body, body wide twitching, muscle fatigue and extreme exhaustion and fatigue.
• I had 2 EMGs…the first one showed mild right median neuropathy that can be seen in carpal tunnel…the 2nd one two months later was normal/clean.
• The 2nd one was done due to an extremely high Asialo GM1 antibody level of 3200. Anything above 50 is abnormal.
• Lots of Testing and results are in my original post.

As months went on, I began to feel a bit better relative to bulbar symptoms, including excess saliva, twitching, and right-side weakness. Still struggled greatly with muscle fatigue and overall exhaustion.

At the end of October 2022, Covid finally got me good. I was pretty sick but felt that my body responded better than I anticipated. I never fully got back to where I was prior to Covid and as the holidays approached my health began to decline.

In January 2023 I had a deep tissue massage thinking it would be beneficial and I haven’t been the same since. I am not saying it caused my further decline, but it definitely was a turning point. I didn’t feel well at all immediately following the massage and became very achy and groggy and went to bed early. Since then:

• My muscle twitching, pain, and spasms returned along with my bulbar symptoms:
• Tongue fatigue, mouth fatigue, lip quivering, swallowing reflex paralyzes randomly but not when eating or drinking, external pressure under my chin to help it.
• Talking causes severe tongue and mouth fatigue…it throbs and is very painful. I hold my mouth to help it feel better. Also, excess saliva.
• I am also experiencing muscle spasms/spasticity in right bicep and tricep and my hand and forearm ache with fatigue from use. My right foot and leg also feel numb and weak as well.
• Over the last few days every muscle feels like it is twisting and turning and in knots. It wakes me during the night, and I cry in pain…during the day is the same. Twitching also wakes me from sleep.
• I don’t get relief from the bulbar symptoms because it is not an issue with swallowing foods or liquids, it is the pain and fatigue and quivering lips that are just always there. The symptoms bother me every minute and intensify with talking and eating. It’s very uncomfortable, exhausting, and frightening.
• I still have intermittent terrible sensations deep inside my body that feel like a terrible tickling or “funny bone” feeling. Like I am plugged into electrical socket and my body will explode from pressure. This is how my declining health journey began 4 years ago with this feeling but it is now the least problematic and least frequent.

I had another EMG 2 weeks ago and it was normal. Neuromuscular specialist’s report read: This is a normal study. There is no electrical evidence of motor neuron disorder. they didn’t test my bulbar region. They definitely didn’t go under my chin or near my face (one of last year's EMGs did go under chin).

It is difficult for me to raise my right arm because my tricep muscle chronically hurts and my bicep is in a painful knot, the arm gets terribly fatigued and painful with use, but I can definitely do it. My right forearm and hand are very fatigued and painful right now and are weak from typing. Muscle fatigue, tightness, pain and constant twitching are very real and my bulbar symptoms are of great concern.

Lastly, in the past the symptoms would sort of wax and wane but now they are full speed ahead with no relief.

All of these symptoms have severely progressed since last year…specifically within last 2 months. My body is so uncomfortable and fatigued I have to force myself to get to appts and shower daily. I can’t function. Every night I awaken in terrible muscle pain…every muscle is so tight in my body I feel like I am literally turning to stone. It’s an unbearable stiffness especially in upper body, though it’s all over.

I am very uncomfortable, exhausted, and afraid and not sure what is going on. I know I have the normal EMG but I am declining fast and don’t know what is going on. I feel sick inside because something is very wrong and I fear it’s MND.

I thank you sincerely for your time and input and apologize for the long post.

 

[ShiftKicker]

Here is your previous thread:

Could This Be ALS?

While I can't speak for what might be the issue, it sounds like you have been very recently reexamined and still do not show the specific pattern of symptoms that indicate ALS, and a clear EMG also clears you. That is not to say there is nothing going on, only that it is not ALS. What does your neuro say next steps are?

 

[miejajoy]

Well, my PCP ordered the most recent EMG due to my worsening symptoms. She is very concerned, especially about bulbar issues,and put in a referral to have me seen by a neuromuscular specialist. That appt isn’t until July 31st which seems so far away given my progressive debilitating symptoms.

I haven’t had a thorough clinical exam in a year, though the doctor who performed the EMG did do a quick strength test prior to starting, which I would say was normal. Would the EMG pick up issues in the bulbar region?

As far as next steps, I am in a waiting pattern until that appt. My PCP keeps trying to get me in sooner and has recommended I reach out to patient advocacy or even try outside the system. In the meantime, she has also prescribed glycopyrolate for the saliva. I’m not sure how I will tolerate the ongoing progressive bulbar weakness, fatigue and pain, and the exhausting excess saliva. The body muscle stiffness is also unbearable over the last couple of weeks. It’s not my nature to complain but I’m failing more each day and am now housebound.

Thank you from my heart.

 

[miejajoy]

Thank you, also, for my previous thread!

 

[Nikki J]

If you are housebound that is presumably due to leg issues which I don’t see details of? if you had an extremity emg two weeks ago it certainly should have showed a problem so severe that you can not leave home.
without seeing the emg report and knowing what was done it is hard to know if bulbar screening was done as tongue and under chin are not the only sites.

I am surprised there is no neuromuscular availability in Boston for 4 months. Are you limited by insurance As to facility? Where are you trying to go?

 

[miejajoy]

I will look for and try to attach EMG report. And yes my appt is at MGH. Not limited by insurance…

My whole body is affected by the stiffness and what can be described as severe muscle tightness. It makes walking uncomfortable as well as moving my arms…especially right hand and wrist. It’s in all of my limbs and my back…just more so on my right side of body.

Can I just take a pic of report?

 

[Nikki J]

You need to block identifying information on the emg report. If you want to upload a picture edit it first.

I am surprised it is that long for the first available clinician but I know mgh is busy. They will also take excellent care of you. Who are you seeing?

 

[miejajoy]

I am seeing Dr. Reza Seyedsedjadi…spelling is probably wrong.

 

[Nikki J]

Dr Seyedsadjadi is well qualified and will take good care of you. Let us know how it goes

​

 

[miejajoy]

That’s good to hear, thank you. Are you from Mass? Boston area? Hoping maybe to have things figured out before then. Trying to remain positive.

 

[Nikki J]

Yes Boston. I go to MGH. you can see location if you look under a person’s username

 

[miejajoy]

Hi All,
I am posting my EMG as I have it now. I understand that it is normal and for that I am grateful as it gives me hope. My bulbar symptoms are constant and debilitating and I don’t think the EMG tested the area for that. Am I mistaken? How can they say no evidence of the area wasn’t tested?
I am very, very unwell and in 24 hour pain and discomfort.

• This has been a 4+ year progressive exhausting and debilitating journey.
• I sit here right now with a weakness and spasms in my right arm that make my function limited. My once right-sided only weakness and muscle fatigue has now spread throughout my body.
• The last 2 months have been rapid and worsening pain, stiffness, and all over twitching.
• The excess saliva, the tongue and oropharyngeal pain and fatigue is a 24 hour issue.
• Last night I awakened with chest (new) and upper back spasms/pain that hurt upon breathing.
• I am unable to maintain daily functioning due to an unrelenting exhaustion…I am sapped of an ounce of energy.

I apologize for repeating myself. I’m just trying to make sense of it all. I was forced to retire early last year and progressively lost any semblance of my life. My PCP is concerned and my appt with the neuromuscular specialist as I‘ve said isn’t until July 31st.

 

[Nikki J]

You did not have a bulbar emg true. However you did you have multiple muscles tested in your extremities on the right side where you also report symptoms so they can say they found nothing there in a highly symptomatic area. Do you think your arm is one cause and yet you coincidentally have bulbar ALS? I think they say no evidence because they emged a very symptomatic area.

obviously you are ill. There are many debilitating diseases, some quite obscure. Fortunately you have an appointment with Dr Reza He may well wish to do his own emg. This is common at mgh and if he suspects you have anything that would show on emg he will schedule it. You can ask to be on a cancel list. Tell them ( if it is true) that you can get there in x hours if they have a last minute cancel

 

[miejajoy]

Thank you so much. I really do think it is all related and not separate causes, but honestly I don’t know what to think anymore. I am on their cancellation list and also call often to check, but have had no luck. I feel like, based on my severe symptoms, something should have shown up…even outside of MND. That’s what frightens me…besides my worsening symptoms. I want to be positive about the EMG but I have sick feeling inside.

Thank you again from the bottom of my heart. Your time and support are appreciated.

 

[Bestfriends14]

You've been fearful of "something" since 2019. A year ago, you were fearful of ALS. You had several tests that concluded no ALS, plus you have no symptoms that say ALS. All of this has been repeated this year - tests that say no ALS and still no ALS symptoms. What else do you need for you to accept that you do not have this disease? The answers from the folks here are not going to argue against the medical community.

My husband would jump for joy if he had your symptoms and tests results. Unfortunately, his issues are ALS and since 2019 (your first set of issues), he has become a quadriplegic, relies on a machine to breathe, is fed through a tube, and has battled pneumonia 4 times. That's what ALS is.