Is this ALS or any ideas at all?

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Worriedinlife

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Aug 8, 2023
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Reason
Learn about ALS
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Country
US
State
OH
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Columbus
Hello. I am a 39 year old female with some strange symtoms that may or may be all related. I am worried about ALS as everyone on this forum appears to be. Current issues include fasciculations, weakness, cramps, tightness, and more so please hear me out. Sorry for the long post!

Jan 2023 I had throat issues. Possible spasms in my throat that felt like a ton of pressure was being applied. I had a hard time swallowing liquids and my tongue appeared slightly swollen. I went through multiple rounds of steroids and it approved until Mar 23 when I got the same symptoms but this time also had eye pain, difficulty with peripheral vision, blurriness, and my Eustachian tubes kept fluttering. Multiple ent appts, steroids, eye appointments later, they suspected autoimmune or muscle involvement but never found anything. It approved again but not entirely.

In may 23, I started to get tightening of my r arm muscles. They wouldn’t release. I had fatigue, pain, and some tingling down my right arm into my fingers. I couldn’t hardly open my r hand. I assumed a nerve issue. I was scheduled for an ortho visit about 1 month from then. By the time of the appt, I was having what felt like full body shakes or vibrations, mainly when I was lying down. I also started feeling weak in l arm and had an noticeable small tremor in both arms. At my appt, the doctor was only interested in my r arm (because it was scheduled that way). Jun 23 emg of my r arm as normal and he said i needed a neurologist. He ordered a cervical mri in the meantime. I had a previous brain mri apr 23 for a cyst that has to be monitored and it was normal. Cervical spine mri read normal.

I started having issues with my quads and abs. I could not feel contractions or the burn after using them. I had been struggling to work out due to arms and now I couldn’t feel these muscles. I could walk and lunge but just couldn’t feel it. Same for abs. I saw my primary care Dr Jul 23 and she did a ton of bloodwork. Autoimmune, Lyme, every vitamin and mineral, ck protein, immunoglobulins, etc. everything was normal. She noticed muscle tightness that she called spacicity in my arms and one leg. I had a hard time on cognitive tests, and I was having horrible headaches. I also started having burning feet at that time, feeling like they were wet at times. She referred me to an ms clinic. I went Jul 23 to MS Dr and she did basic neuro tests ( push, pull, touch finger and nose, lift and drop toes, etc). She said these were normal and because no lesions on brain she didn’t feel it was MS. I was referred to general neurology.

My legs and abs started getting feeling back, my arm improved, and I thought I was getting better. The shaking was even less frequent. Then my r arm tensed back up, and this led to having fasciculations in my right bicep. For 4 days it was in one spot and kept getting stronger and more frequent. Then it moved a little up and still was frequent but less strong. My left lat muscle started to feel strange, like half numb and twitching. My throat started to get bad again. I went to a general neuro at the end of last month. He was unsure what it was. He saw the bicep twitching. He did same basic tests. He stated all the common als symptoms and common ways they appear like that is the only time it is als. Oh, you have muscle tightness, pain, shaking, that isn’t als. I said right arm is shaking and feels so fatigued, but he said it still had strength in it. He redid ck lab and it went from 53 to 89 in a month, but it is still “normal range.”

I have since gotten twitching on left side of abs, l shoulder, and left calf/shin area. It is starting to feel tingly around my left shin. R bicep tightness went to tricep pain and tightness, and now it os forearm tightness. Like it is moving down my whole arm. I wake up shaking all over and twitch while sleeping. I had a limited r side only emg yesterday and I still had the bicep fasciculations but everything else was normal. He considered it a normal emg with possible benign fasciculations.

He didn’t check throat or l side as it wasn’t written for it. I am having clicks in my throat at times when I speak or swallow. Even my spouse can hear it when I am talking. It feels like my soft palate can’t move very much and feels like there is something under the r side of my tongue. It is hard to swallow and I am not eating or drinking enough because of this. My r hand shakes when I try to do anything, including eating. I feel like I can barely use my arm. I have frequent twitching now in left abs, left leg, and feel like it os in chest or abdomen. I keep getting burning pain mid back like it is horribly fatigued but I am doing so little.

My primary care physician feels like it is als and wants me to keep pushing neuro on it. But I am not scheduled to go back until October. I am sure this seems all over the place and I probably didn’t describe it the best. Any ideas at all? I feel like things just keep changing and I am scared. Again, throat issues, tingling, muscle tightness, fatigue, shakes, tremors, r arm weakness and tightness with pain that progressed from bicep to tricep to forearm. Occasional twitches in r leg too.

Thanks.
 
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Hello-

If you could read the following link here: Read Before Posting for information about many of the symptoms that bring people here. Your neuro is right in that what you list would not give a neurologist cause to be concerned about ALS. You really do report a lot of sensory issues, which point towards something other than ALS.

If your gp is concerned, they should be in communication with your neuro themselves outlining why they have questions and asking for an expedited referral for a neuro reexamination, and not asking you to pressure a specialist yourself about a specific disease. It must all be very worrying for you and stressful not knowing what the trouble might be- however, as you will read in the link we have pinned, this is not how ALS really starts. Not at all a dismissal of your symptoms, but only that your diagnosis will lie in a different direction.

Take care
 
This history sounds like no ALS of which I have heard. With everything you've described, I would have expected even a limited EMG to show something more dire than bicep flutter if that were a concern. But apart from ALS, when I read things like "brain cyst that has to be monitored" and you're telling me your PCP suspects ALS still, you've been through multiple rounds of steroids for an unclear indication, etc., I'm thinking you could use some different bodies on the care team.

Not knowing where you are in the US, I would get an appointment with the internal medicine service (usually there are docs who specialize in the diagnosis side within that) of an academic medical center who can review your records and go from there. Being able to access specialty care within the same institution can also foster more coordination within the team.

Best,
Laurie
 
If the Neuro saw anything notable concerning ALS you would have got
a sooner appointment. That's the way it works.

It does help our very ALS knowledgeable members to help you with
more than just US in your Bio location.
 
*I did forget to add my tricep on my right arm has gotten a lot smaller. It is very noticeable when you feel it, especially around my elbow. It feels like a chunk is missing by my elbow.
*Also, my brain cyst is just a pineal gland cyst they found years ago when I was having a lot of migraines, and they now just monitor it. It hasn’t changed in 10+ years.
 
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