Help — so confused and need advice

Status
Not open for further replies.

PaulyD

New member
Joined
Dec 10, 2022
Messages
8
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
PA
City
Philadelphia
Hello, All

In August of 2022 I started having terrible burning sensations in tops of hands and feet (I know, points away from ALS). This spread up arms and legs and shoulders over the next 2 months.

October of 2022 I started having twitches in legs that moved to entire body within a week or two. Terrible muscle tightness and soreness in legs, feet, and hands. No clinical weakness but my legs shake going up and down steps and my fingers struggle to do things like pick up coins or type. Right foot is worse than left foot. I limp periodically. Left hand is worse than right — the “pulling” pain in fingers is unbearable at times. Terrible shoulder burning pain on both sides.

Sometimes I get a kind of “electric shock” pain throughout entire body that lasts for 30 minutes or so multiple times a day.

Then I started to notice trouble swallowing. Not choking, but food doesn’t want to go down and liquids feel like they’re going down the wrong pipe. A lot of phlegm. I’m always clearing my throat for minutes after drinking something. Dry cough. Face has patches of numbness on one side and tongue is always numb like it has a coating on it. No slurring.

I’ve had 3 MRIs and they found some T2 hyperintensities, but they think they’re just from migraines and possibly high blood pressure. Some minor disc bulging around C5 and some minor stenoisis.

I was concerned about ALS because of twitching and weakness.

Went to neuro and she wasn’t concerned at all. No clinical weakness in exam, no signs of atrophy. She only saw one quick twitch. I begged her to do an EMG and I just had that done last week — she said it was perfectly clean. She did 2 legs and 2 arms. She said she wasn’t concerned about swallowing issues because I wasn’t choking. She says clinical weakness or paralysis would be cause for concern but as of now she isn’t concerned. She has no ideas what it could be but she says she’s certain it’s not ALS.

Does any of this sound like ALS symptoms to anyone? Should I pursue this further? Am I too early in the diagnostic process? I’m very worried about the swallowing — could it be bulbar? She didn’t do a swallow test or EMG of the tongue. I’m just very scared right now and don’t know what to do next. Thank you for your input.
 
Hi Pauly-

You've pretty much laid a case for why you don't have ALS- you even said it yourself. Your neuro doesn't think so. Your EMG doesn't show any signals. Your collective symptoms don't indicate that's any real concern. A bunch of strangers on the internet definitely shouldn't contradict any of that either.

If you don't know what to do next, speak with your doctor. That's their job to figure out what's going on and what your next steps are. This is not a dismissal of your symptoms, only that you obviously don't belong on an ALS forum.

Take care
 
Just as the neurologist has tried to explain, we will back them up - this sounds nothing like ALS.
Try reading our post titled READ BEFORE POSTING as it really explains a lot.
I think you can ask about help dealing with your fears and anxiety as they may not be the cause, but they are truly making all that you are experiencing far worse. If you can get that sorted, you will know what you are left with, but it won't be ALS.
I wish you the best.
 
Thank you for taking the time to respond. I appreciate it very much.
 
High blood pressure and migraines, especially if poorly controlled, can cause a variety of physical manifestations such as you describe. There might also be underlying causes that should be addressed, such as liver or kidney disease. If your internist is not helping you enough with all this, I would explore other options.

I agree that there is no reason to think of ALS.
 
Status
Not open for further replies.
Back
Top