Desperate for an answer. Please

Learning89

New member
Joined
Dec 11, 2024
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Hello all,

I am a 35 (m) - former athlete in college. I live a very healthy lifestyle with an amazing wife and two beautiful children.

I’ve had a very hard and emotional last month. I’ll present my symptoms below - hoping to get some clarify.

Todays date is 12/15 and symptoms started on 11/17 (roughly one month ago)

I woke up 11/17 with tingling in both feet and both hands. I thought it was just the way I slept. As the day went one it was on and off and then I felt numbness on my face (majority was left sided). I decided to go an urgent care and they sent me to an ER (possible stroke symptoms).

@ the ER (1st visit) 11/17 - they ran all the tests, mri (spine head / w contrast ) , CS. They didn’t find anything - I was ultimately admitted and discharged the next day with no answers. They simply said “we don’t know, could be an injection,
Nerve damage”

Two days later the symptoms came back. But this time I had more symptoms:

Very weak, brain fog, no appetite, sharp pain in lower abdomen, hands and feet feel heavy, tightness / soreness in forearms and calves, weird dull headache in back

I then saw a Neurologist on 11/21: He examined me and my symptoms and said it could be “AIDP, and that he wanted to admit me back to the hospital for more testing and IVIG treatment”

I spent another night in the hospital and was discharged the next afternoon after two infusions of IVIG.

When I got home on 11/24: I had a multitude of new symptoms which lead me to this forum.

Sunday 11/24

Arms and forearms weak
Knee and quads hurt
Lower back pain
Brain fog / out if it

Monday 11/25

Am Headache
Am left forearm tight
Slight brain fog
Very Tired
# 2 a lot
Sick / nausea feeling

Tuesday 11/26

Much better
Slight tired
Woke up 11 pm dripping sweats
Big tingles at night

Wednesday 11/27

Little tingle am
Right forearm pain - deep in muscle / tightness
Light Brain fog
Dehydration feeling….
Weird sensation back of throat/ hoarseness
Tired

Thursday (thanksgiving) 11/28

Very Tired / weak
Nauseous feeling

Friday 11/29

Slight improvement
Tightness in chest
Slight Brian fog

Saturday 11/30

Slight improvement
Right forearm tightness
Slight Brain fog

Sunday 12/1

Slight brain fog
Back of lower head dull tightness

Monday 12/2

Slight brain fog
Tender Lower back skull
PM- improvement of brain fog

Tuesday 12/3

Great
PM tingling right foot ankle and R forearm

Wednesday 12/4

R forearm tight
Light weakness
Weird shaking or tremors / shaking R forearm

Thursday 12/5

R forearm tight
Stiff hands more R Side

Friday 12/6

R forearm tight

Saturday 12/7

Both quads (soreness/ cramp feeling)
R & L forearm tight & stiff hands

Sunday 12/8

R & L forearm tight & stiff hands (right is worse)
Woke up w headache
Slight R hand tremors
Weakness / sluggish / tired (morning and afternoon)
L eye pressure (squeezing feel)
Leg twitching - not sure when started

Monday 12/9

R & L forearm tight & stiff hands (right is worse)
Tremors both hands
Right pinky and ring finger feel numb and right forearm (massaged and felt slightly better)
Left side face numb (am)
Fatigue / sluggish / sick feeling (morning & PM)
Weird neck pain in back
Headache (top of head)
L eye pressure (squeezing feel)

Tuesday 12/10

Left eye pressure
R & L forearm tight & stiff hands (right is worse)
Bad R forearm pain

Wednesday 12/11

R forearm very tight & stiff hand bad
Right bicep (pm) cramping

Thursday 12/12

R forearm very tight & stiff hand bad
Right bicep (pm) cramping

Friday 12/13

R forearm very tight & stiff hand bad
R Hand Tremors
Started Gabapentin (PM)

Saturday 12/14

Less tight R Forearm than yesterday/ less stiff hand (R)
Lots of pee
Feeling better around 3pm
5:30 pm Major Brain fog at party (felt dizzy)

😵‍💫

Thanks for keeping up with this post. My biggest concerns are now the intense pressure/ cramp/ tightness deep in my right forearm. On top of that my right hand feels very tight and sluggish- strength is fine but it’s hard to move finger mobility compared to the left hand. And last night at a holiday party I felt like I was going to pass out mid conversation.

I saw my Neurologist on 12/12 (3 days ago) - they did a EMG & Nerve test. At the end of the test the Neurologist said it Is NOT ALS. He does not have a conclusive answer of diagnosis. Leading towards CIDP or MNN

I cannot sleep. I am up all night playing Dr. Google - my anxiety is through the roof.

Please 🙏 let me know what you All
Think. Thank you
 
Agree with your neurologist. It doesn’t sound like ALS at all and apparently your emg backed that up. If you want to share the report remove identifying information first

You report a ton of sensory symptoms which are not typical at all of ALS but I don’t see reports of failure or clinical weakness which is the hallmark of ALS.

I am somewhat surprised by the ivig and the cidp/MMN differential but your neurologist is the one seeing you. I hope they have a plan to explore this Still you are in no way describing ALS and I strongly urge you to stay away from Mr Google
 
Thank you @Nikki J

I don’t have the report for the EMG & Nerve test but will have it this week and will post it.

I will
Add my b12 numbers are high: 938 (11/18) and 1,784 on (11/24)

Thyroglubin was 7.7

Waiting on results from more tests:

Extended Myositis Panel
Sensory-Motor Neuropathy Complete Antibody Panel
Chronic Inflammatory Demyelinating Polyradiculoneuropathy/Neido

I’m worried about the pain/ tightness in my R forearm and the limited Mobility of right hand. It’s very scary
 
I trust that an internist is working up the increased B12, which can cause tingling, etc. and also can be a sign of systemic disease, like diabetes, liver disease, and blood disorders. I would certainly ask about that if you're not sure what tests have been done and what has been ruled out.

But totally agree that this doesn't sound like ALS at all.
 
@Nikki J @lgelb

Thank your for your prompt responses and I’m so sorry for what your both going through personally.

How would you both explain the extreme forearm pain, limited finger dexterity (pinky and ring) and limited wrist mobility that I’m only dealing with on the RIGHT side only?

It’s one sided and seems to be only remaining symptom. I can feel the pain radiate when I push on my forearm
 
It is not our job to diagnose you. That is for your doctors. To me the description above sounds musculoskeletal and would be consistent with a tendinitis but it is up to your doctor to examine you and diagnose. Again it doesn’t sound like ALS at all and ALS is what we do here

Your emg apparently did not show ALS and your symptoms don’t indicate it. Continuing to insist they do isn’t going to get you anywhere here or with your doctor
 
You cannot sleep. You are up all night playing Dr. Google -Your anxiety is through the roof.

That will play a big part of whatever diagnosis you get that is not ALS.

There is not really anymore this forum can do for you.
 
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Your EMG is 100% perfect. It is also the most extensive one I have seen. Those were a lot of muscles they tested.

It looks like you have some nerve irritation in your elbow which totally explains your forearm and hand symptoms. Absolutely nothing to do with ALS and probably would respond to a tennis elbow brace , not leaning your elbow and forearm on things and possibly alittle pt or ot

Clearly not als as your doctor already said
 
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