Could use some advice

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Vangie

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Learn about ALS
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Wabash
Hi everyone. Just wanted to update. I have successfully stayed off the site for a long time now as some recommended 🤣 I just wanted to see if anyone had any advise.

I have been seeing a neurologist for over a year through IU Adult Neurology. Have had several EMG and NCS done with diagnosis of neuropathy brought in by either my treatment for leukemia or the shingles virus. He said in January you don’t have ALS or any of the bad “S’s” as MS runs in my family with my maternal grandmother and maternal first cousin. I was put on medication and off I went.

In the last week or so I got an infection in my chest and new symptoms or exacerbated symptoms took hold an has scared me greatly. Usually I have numbness in my left toes, last two. I have always had burning under the skin mixed in with tingling and feeling like my foot is weak and asleep. Now all of a sudden my right toes are numb, feel dead basically, same toes as the left. I noticed a slow response that same week to raising both arms, like there was resistance from me. Through the course of the day my left foot will be off, weak and full of tingles and burning. Then during mid day it might feel fine and my right foot is tingling and I feel like I am walking weird, slow and awkward. Like I’m in water? Then my right thigh started to feel awkward.

So basically through the course of the week following this infection I have lost strength in both arms and legs all at the same time. My feet feel constantly asleep. When I scroll through my phone my thumbs feel awkward like there is a resistance to do what usually is very natural movements. There is NOT anything I can’t do yet but ai am finding my fingers and hands are not as cooperative as before. Is this indicative to ALS? Do all the functions just suddenly start all together.

I have an MRI of the brain scheduled for this coming week then follow up with neurologist. I saw a NP and it scared me because my doc has always told me it’s not ALS but she said it’s something she has to account for because “It knows no age” I don’t really remember driving after that conversation but ai did manage to see my oncologist that day since I was in Indy. He did a Neuro exam and said it’s not ALS you are strong and your symptoms started 3 years ago. It would be more advanced at this stage. My body says I’m struggling. I have no idea what to think.
 
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If you were on antibiotics for the infection, there can be side effects like feelings of weakness. Infections themselves can take their toll.

I don't know how recent your last chemo was, but that can take its toll as well, as you know, even in a delayed fashion.

You haven't described any added reason to worry about ALS.

Best,
Laurie
 
All you are reporting is sensory and that points away from ALS. I will add that an ALS neurologist once told that all neurologic symptoms whatever the cause will worsen when ill, overtired, stressed etc
 
All you are reporting is sensory and that points away from ALS. I will add that an ALS neurologist once told that all neurologic symptoms whatever the cause will worsen when ill, overtired, stressed etc
Thank you Nikki! My husband wondered if everything is inflamed because of the infection but she really threw me for a loop with that conversation. Thank you so much!
 
You’ve been cleared of ALS. Take that as a gift. Infections can have effects that sometimes linger weeks or months after treatment. There can be fluid and electrolyte shifts that take a while to reequilibrate, and the immune system gets messed up. It’s common to lose strength during a severe infection, and it may take a while to get it back. I would keep following with your doctors, but allow yourself time to heal.
 
You’ve been cleared of ALS. Take that as a gift. Infections can have effects that sometimes linger weeks or months after treatment. There can be fluid and electrolyte shifts that take a while to reequilibrate, and the immune system gets messed up. It’s common to lose strength during a severe infection, and it may take a while to get it back. I would keep following with your doctors, but allow yourself time to heal.
Thank you so much! I will do that.. I think I got freaked out by the same toes feeling “dead” and should definitely stay away from google❤🙏

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If you were on antibiotics for the infection, there can be side effects like feelings of weakness. Infections themselves can take their toll.

I don't know how recent your last chemo was, but that can take its toll as well, as you know, even in a delayed fashion.

You haven't described any added reason to worry about ALS.

Best,
Laurie
Thank you for responding! I think the ties being the same on both sides freaked me out. Thank you so much
 
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