Could this be als?

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Oconnokm

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Im new to this group and searching for answers. I have had Covid 2 with various bizzare symptoms and reactions so every doctor I see is telling me my issues are from Covid. I don’t buy it. I literally have every symptom of ALS and is debilitating with zero answers. I’m 55 year old female my issues started with lack of hand control dropping things. Then random back pain. Several falls tiredness and general overall weakness. Last week I started experiencing neck muscle issue and swallowing problems. I have sever muscle twitches and Charlie horses. My speech is slurred and hard to talk. The neck issues went from like 0 to 10 in weeks. Any inshight would be so appreciated
 

Nikki J

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Have you seen a neurologist and had an emg? What were the results?
do not underestimate the effects of long covid. There is a study in Boston on it. Look into that. It is not the job of a study doctor to treat or diagnose but they can still be helpful and might give you direction
 

Oconnokm

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I have seen 2 neurologists and been tested for Lupus. My symptoms have literally gone not enough to notice to full blown what is going on in weeks. I am struggling to swallow and us my neck and mouth muscles that came on last week. My arms are like feel like they don't really belong to my body. I do have tingling and numbness in hands and feet. It just seems like it came out of no where. I chalked the arm issue up to carpal tunnel. Every muscle in my body is weak. The muscle spasms are non stop. My primary said it was a virus but all my blood tests came back clear. I am at a loss
 

lgelb

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ALS does not present like that, and as Nikki notes, long Covid is a serious problem for many people and there are other fast-moving viruses. The specialist that knows it best is not necessarily a neurologist, so I would look into the Boston study she suggests, where you can be referred to if the investigator feels that another avenue is best explored.
 

Oconnokm

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Its Friday! I had a follow up at MGH neurology today and they have ruled out MS- they do agree something is neurological based on the blood work, and nuero exams- but said it did not appear to be ALS because there is no noticeable muscle atrophy. I am having difficulty with my tongue hard to talk and chew sometimes and my neck is very stiff and sore. Swallowing feels like I am gulping, have full twitches in both legs, now moving up to my trunk and arms, have weakness in my hands and trouble using them- can't button shirts or hold the toothbrush correctly. My left leg is weak and doesn't move as well. These symptoms have literally progressed in a few days. I am out of my mind and searching for answers. In anyone's experience, could this be something else? I am waiting to see if they will schedule the EMG. I know I am going down a rabbit hole but I need some guidance. Of course Dr. Google has already confirmed my diagnosis. Any insight would be amazing
 

Nikki J

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If mgh neurology who saw you and examined you did not see ALS then that trumps mr google a zillion times over. They surely must have given you a plan and I would think their thoughts as to cause of your symptoms. If you were seeing an ms specialist they might refer you back to a previous doctor but I do not think they possibly just said not MS so go home and live with it
 

Oconnokm

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My fear is that it is so early stages that he did not see any of muscle weakness I am feeling. He was very thorough and did say anything is possible- I was so nervous I am not sure I gave the right time line of symptom onset or progression. He was puzzled by the tongue and mouth muscle issues and the fasciculations but said if it is ALS its early on. It seems to bizarre I would have all these symptoms literally start exasperating at once? he is running more labs but didn't seem to pay attention to the twitching and the muscle loss in my mouth which is the most concerning to me. Can the symptoms flare up like that and progress in weeks? I am a basket case and can't stop crying which I am sure is making it worse
 

Nikki J

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I have never thought I was weak in an area that was not confirmed by my next exam. And I still don’t feel weak. I believe I should be able to do the things that have failed. It is not uncommon for PALS to self test thinking if I only tried harder I could do x We had a PALS thread discussing this once and several of us admitted doing that

aggressively progressing als would be obvious to an experienced neurologist. There are many things that can go including long covid. Do you remember the news story a while ago about a local woman a social worker I think so disabled by long covid that her spouse had to wash and dress her and assist her to the bathroom? It eventually started to improve fortunately

if this is so stressful ask them to refer you to someone to help you deal with it. whatever the physical cause treating your stress will help
 

Oconnokm

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We did address covid and he said he didn't feel it was covid related. I am just struggling to wrap my head around all the symptoms that are clear markers for this disease and yet still don't have an answer and insurance is not helpful they refuse everything. I just don't see what else it could possibly be. It might seem fast moving to me because i have not exp with it. Is there typically degeneration with in a month?
 

Nikki J

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There are many many diseases humans are subject to. I do not think you are a neurologist or any kind of doctor? It is up to your doctors to search through the possibilities. Please do not keep focusing on ALS You should be able to read your notes online soon. Your aftercare summary is probably already up or will be shortly and you can see exactly what tests are ordered

there is no typical ALS progression but it is not something that changes daily
 

Oconnokm

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I appreciate your reply- its just such a rabbit hole and I can't get out of it. The system is slow and my symptoms keep getting worse by the day. Making it more terrifying is my dear friend was diagnosed 2 years ago and so many similarities. I know I shouldn't read into it or project my issues but the healthcare system is slow and I need have been bouncing around for months not knowing. When you say failing not feeling- can you be a bit more specific on the feeling part? My muscles are aching and throbbing and my arms are burning and tingling but I have lost most of the mobility in my fingers
 

Nikki J

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I feel no abnormal sensations at all. And I absolutely think I should be able to ( fill in the blank )there are lots of things that have stopped working now- stand on heel walk on tip toe move my foot. etc) but I tell my body to do it and it just doesn’t. It is weird and hard to understand if it isn’t happening to you.
 

Oconnokm

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side note, I also have hyperreflexia and can't stand on a heel or walk tip toe either. I have limited it takes a few minutes for the brain and the motion to connect and then its slow and jerky - I am having so many muscle twitches and pains that come and go. My gag reflex is also off. I am doing a lot of dry heaving. Its a mystery and I need some help in figuring it out
 

lgelb

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Since they think it's neurological and they are a renowned neuro group, I think you are in good hands, but agree that it sounds like something other than ALS. I cannot imagine any payor refusing to reimburse an EMG for starters. Did they order any new blood work and was any of what you've already had positive?
 

Oconnokm

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All labs are clear. I should be more clear. The mobility in my fingers is more like they move but they don’t work right. Like I can’t button or screw a cap on a bottle. My tongue is very weak and swallowing is hard. Like I have to think and push things down. I feel like I’m trying to talk with peanut butter in my mouth. My neck is very tight. I tried to explain this but the neurologist just kept saying he didn’t see atrophy in arms or legs. I am confused. Would that come later? I feel like this is early on. I can still walk and move my arms.
 
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