So worried

[Amylife]

6 months ago I had weakness on my right side, numb tongue, facial numbness, followed by fasiculations in my tongue and my entire body. Fast forward and I have right foot drop burning tongue, difficulty swallowing I just left the hospital after an endoscopy, swallow study and a manometry, clean MRI of brain, thoracic, cervical and lumbar. I had an EMG at Mayo and it was clean last month but none of this makes sense. My tongue feels thicker I cough everytime I eat. I am a mess I am trying to schedule an appt with a neuromuscular neurologist but is it possible to have a clean EMG and have bulbar onset? I also have noticed my voice is hoarse I struggle to find words, my right ear is constantly in pain. I have also gone to ER two times because of pain in my arms and legs feeling like there is pulling on my muscles.

 

[KarenNWendyn]

Clean EMG rules out ALS.

You also describe a lot of sensory symptoms which point away from ALS.

Keep working with your doctors. You have something else going on, but it’s not ALS.

 

[Amylife]

Thanks for your response, the EMG was for my right side limbs, if this is bulbar I have read that your EMG can be clean on your limbs, is that correct?

 

[lgelb]

It is very unlikely because ALS attacks all the voluntary muscles' motor neurons, and least of all because you report R side limb symptoms at onset, severe enough to send you to the ER twice. So in your case, "no" is crystal. Your timeline and range of symptoms, from ear pain to word-finding, doesn't fit either.

I would ask your PCP about screening to see if a sleep study is merited. I would also re-evaluate your bed, mattress, pillow, humidity and temp. And there is always the DIY study meanwhile where someone you trust can watch you sleep.

But you're in the wrong place here -- an excellent thing.

Best,
Laurie

 

[Amylife]

Thanks, I did end up in ER first time for right side weakness and what seemed to be paralysis, following that I had severe nerve pain and muscle spasms on my face to include hemifacial spasms, my GP prescribed gabapentin and that seemed to help.

When I mentioned bulbar it is because about three weeks prior to the first episode I felt the burning tongue, now I still have the right side weakness, a hoarse voice, my right jaw feels tired and sore, and swallowing is difficult. I have had all of the possible blood tests as well as MRIs to rule out anything else. I would think that one could have bulbar and limb onset at the same time.

Over Thanksgiving holiday I couldn't swallow well at all so I went into the hospital for 4 days, the other two hospital ER visits were due to the excruciating pain i felt in my quads and arms. I truly am scared I am 42 with three kids and cant get in to see an ALS neuromuscular neurologist until mid January.

 

[ShiftKicker]

Amy, please make sure to read the https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html carefully. This addresses much of the sensory issues you are reporting and provides a fair amount of guidance and information about symptoms.

Simultaneous bulbar and limb onset is not how ALS works. It is a progressive disease- which means it starts in one place and slowly moves to another. It does not start all over or in several places at once. Doctors look at symptom patterns as part of their diagnostic assessment and this is a big one. Not sure what your symptoms might mean, but they point away from ALS, as two very knowledgeable people have already stated above.

 

[Amylife]

Thank you all for your input, I read through the common concerns and I appreciate your quick responses. I am at that point of desperation for a diagnosis after 6 months of failing health my mind wandered to ALS after MS was ruled out which was what the Dr.s initially thought was wrong with me. I will follow up with the neuromuscular specialist and provide and update. Thank you and God bless all of you.

 

[Amylife]

Something else I thought of that I didnt mention my forearms and wrists are both contracting and my fingers curl inward when this randomly occurs. I also have from what I can tell a wheeze in my right lung and back on right side feels numb, weak and I have also been short of breath including the difficulty with food getting lodged halfway down my throat. I also dont seem to have much saliva left and my mouth is very dry. I also have a strange cough that makes a puff noise at the end and it is a very drawn out unusual cough. Not sure if any of this is relatable but looks like I am waiting to see neuromuscular in January and this will be a long month for me.

 

[KarenNWendyn]

I’m pretty confident you don’t have ALS.

I suggest you return to your primary care physician. One other thing to consider would be a connective tissue disease such as Sjögren’s syndrome. Your PCP could initiate a workup and refer you to a rheumatologist if s/he thinks things are pointing in that direction.

 

[Amylife]

I actually had thorough bloodwork to include a connective tissue cascade disorder, everything came back negative. Today my face is having spasms on the right side of my face around my mouth for the last two hours, with all of the bloodwork I have done they have ruled everything else out. I thought of sjogrens as well. I'm obtaining a new primary care dr on Tuesday I hope he will be a bit more proactive than my last as I asked for a rheumatologist consult and he said he didnt think it was necessary at this time.:/

 

[Amylife]

Quick Update I was able to make an appointment with the referral of my neurologist to USF ALS Clinic for Dec 19th. I will post back after appt. I have mentioned a few things but due to my swallowing issues I have lost over 24 lbs in three months so I am glad that I was able to get in earlier.

 

[Amylife]

Today my voice has cracked several times, become horse and now I have lost my voice, coupled with my swallowing issues, burning tongue, fasiculations all over and spasms around my mouth this doesn't look good to me. I see the neuromuscular neurologist tomorrow but I'm so scared of what he will say.....

 

[Amylife]

I went to the "neuromuscular specialist" he didnt address any of my concerns, swallowing issues, right side jaw and ear pain, right leg has tingles as if it has the chills and drop foot, my tongue feels like it is burnt, anything I drink hot feels scorching, cold liquids feel freezing. Tongue feels swollen and twitching is still all over. Said no ALS but did not address any of my mouth and swallowing issues, I guess I am awaiting my appointment with the USF ALS clinic on Dec 19th. Does any of these symptoms sound familiar it's like someone took out my entire right side.

 

[ShiftKicker]

Just keep reading the https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html thread to remind you that sensations are not considered indicative of motor neuron disease. Please wait for your appointment on the 19th. Hopefully you will be able to believe them more than the doctor you have just seen. If you are struggling with anxiety while you wait, please visit with your family doctor and talk to them about things that can help you with this.

 

[Bestfriends14]

No, Amy, as others have said, nothing you post has anything to do with ALS. Why are you not believing this?

Good luck on the 19th and update AFTER the appointment to let us know how it goes. It, too, will confirm no ALS; of this I'm confident. Hopefully you will choose to believe this news instead of being one of the numerous DIHALS posters that choose to chase an ALS diagnosis instead of being forever thankful that they do not have it.