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Nichola

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Hey there,

I’d like to start by saying I appreciate those who are going through this illness and vigilant on these forums, as the comfort of having friends with same possible experiences is something that helps with my current fears.

Here’s my last 3 months of hell:
Male Age 29.

Before condition, healthy and worked out almost every day.

Description of condition:
Three months ago went to ER:
Felt dizzy, sense of anxiety, feeling like feinting, loss of balance
ER discharged me w panic attack. Felt fine.

Two weeks later, began feeling loss of circulation in right arm and right foot. Sort of like a nerve was pinched. I took a walk, decided if condition persisted, would go to urgent care. Went to urgent care. They did blood work. I waited 3 days for blood work. Felt sick needed to lay in bed with no contacts or glasses
Blood work fine. CBC, thyroid, extended panel.

I tried to shrug it off. Went on for about a week. Slight numbness/loss of circulation feeling still in right arm and leg. I noticed during this time, my right arm would fall asleep during night. Like dead asleep and would take a while to regain all circulation.

I began to get a little worried and consulted a neurologist. I wasn’t having migraines at this point, but the neurologist recommended an MRI of brain and cervical spine. I noticed around this time that I began having popping in my jaws and ears almost constantly with talking. It also seemed to relieve the “pressure” that I was feeling in my head.

The neurologist didn’t seem worried, so neither did I. I hadn’t worked out in several weeks, but I was doing “okay.” And went about life.

The day before my scheduled MRIs, I had a severe attack of dizziness and disorientation, so I went to the ER. They ran my MRIs, which were both negative. My extreme dizziness and vertigo subsided the next day.

I went to see my neurologist and told him the results were clear, but that I still felt sick. Energy low, dizziness spells, right side of limbs loss of circulation feeling.
I just wasn’t myself.

At this point, he said he would run a blood work up, and if he couldn’t find anything in my blood that there was nothing wrong with me. He tested for Lyme disease, a bunch of vitamin deficiencies, etc.

All clear. The only positive marker was ANA. He said I should see a rheumatologist.

Throughout this time of 5 weeks, I was able to function, but my quality of life has been quite low as my condition hasn’t improved in the slightest. Sex drive is non existent and I don’t even know if I can function anymore. Mood is low. Energy low. Anxiety.

Then, weeks ago I started getting dry eyes and dry mouth. TMJ, ears popping constant. ETD has been incessant since. Pain and numbness in my left hand. Rheumatologist says i don’t test positive for anything. Says I could have fibromyalgia.Wearing my contacts has become unbearable. I can hardly function, and for the next week days following those new symptoms, I’ve had incredible neck pain and vertigo.

Two weeks ago, I woke up with an extreme migraine and the left side of my face numb. Felt like a horrible headache behind my eyes. Went to ER. No stroke. MRI and CT scan fine. Prodisone 50mg for Bell’s Palsy. Prednisone helped for a couple days. I felt my face shrink and felt better. But still have Extreme dizziness and pain in my neck and base of head. Blurred vision. Can’t drive.

Since this day (exactly two weeks ago), my numbness in my right hand and foot has gotten really bad. It feels extremely weak (limp and like a noodle which I don’t want to move). It sort of just wants to hang there and I don’t want to move it. Lifting my phone to type causes it to cramp and fall asleep. My body feels EXTREMELY heavy. I’ve been in bed for almost two weeks.

Three days ago the weakness crossed over to my left arm. During this time my neck and chest seemed to go numb/weak as well. My limbs are constantly falling asleep. I’m twitching, mostly in my legs, although it doesn’t seem very intense.

But my neck feels like it may snap in half while I sleep. It is so incredibly stiff. Swallowing snaps my jaw shut. I have had a non stop neck spasm for two weeks! I’m even dreaming about it at this point.

At first I thought I might have had a knot or lump or something on the back of my neck (My GP felt the same mass that I did and ordered a cervical mri which was negative) but the mri showed nothing even though I have an extremely tender point on the back of my neck that is a knot.

I cant sleep and feel an insane chest pressure that came on with my left hand weakness. I feel as though a brick is on my chest, and it is not just anxiety. It’s terrible while laying down. It feels SO heavy. I feel it now and my neck feels insane pressure, almost like it wants to jerk.

I feel so worked up and caught up in all of this I can’t even sleep. My work is taking a toll. I feel like talking is harder, my jaw muscles feel so stiff and I have extra saliva in my mouth. Food and drink has a weird taste.

I saw my neurologist yesterday and he did exam. Said I don’t display neurological signs in the slightest, but will give me an EMG in two weeks and an EEG in one.
It’s of my opinion that atrophy or weakness wouldn’t have set in yet, so maybe the two weeks wait is a way to get a better result. But I don’t know I’m not a doctor.

Current symptoms as I type this:
1. 15 pounds weight loss since first had tingling and numbness in right arm and right foot three months ago
2. Eyes hurt, left side of face still partially numb around cheek and lip
3. Insane neck pressure and spasm
4. Heavy, heavy chest pressure
5. All of my limbs seem slow and sluggish, and my shoulders feel like I have the weight of the world on them.
6. Lack of feeling in throat/chest area
7. Dull pain in back of head
8. Can’t put in my contacts or wear glasses or I get extreme vertigo/blurred vision
9. My right pinky finger is permanently asleep. It feels very uncoordinated and useless
10. My whole body feels stiff as a board


I really appreciate those who took the time to read this. I’m in such unfamiliar territory that any guidance would be appreciated.
Best,
Nick
 

lgelb

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Hi Nick,

Glad you are following along with the neuro, and if nothing comes of that, would go back to your internist.

Random thought: was Chiari malformation ruled out? Sjogren's? You did mention seeing a rheumie...

You are working but staying in bed?

Obviously, something is amiss, but it's not ALS.

Best,
Laurie
 

KarenNWendyn

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I’ll second what Laurie says.

You mention a number of sensory symptoms including numbness, pain, pressure, headaches, vertigo, lack of feeling I chest and throat. Also dry eyes. None of that is ALS. A normal strength exam by a neurologist rules out ALS as well.

Best of luck to you. Keep working with your doctors. But it’s not ALS.
 

Nichola

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Hey Laurie,

I really appreciate your response. I got my MRI done at the ER, so I honesty never saw the MRI of my brain. Maybe it’s worth it do an MRI with and without contrast as a baseline to bring my neurologist. That way I can have all my bases covered.

Some of the newer symptoms I forgot to mention:
I have a sensitivity to startling sounds (seem loud and give me headaches/startle me).

My words seem slurred and my teeth seem to clatter a bit/jaw seems to jerk. Mouth dry and w saliva. Voice seems harder to project.

I feel woozy when I put on my glasses. I am completing tasks but in my head I seem so uncoordinated, and my vision blurs, especially when reading computer and scrolling.

My skull/jaw feels very tender, and my temples hurt really badly. I’ve had a concussion once before when I was much younger, and it feels somewhat similar.

My concern in regard to this forum was the transition from numbness in my right arm and leg to these newer symptoms of incredible tightness in my jaw, neck pressure, head pressure, constant ETD, speech clumsiness, facial numbness-all over the last month; with these last two weeks being more intense.

I feel like whatever is wrong with me is spreading, and I was concerned bulbar symptoms of ALS were developing.

I appreciate your response. I will post results from my EEG/EMG.
 

Vincent

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Did you read the READ BEFORE POSTING pinned post in the DO I HAVE ALS forum. All of your questions are answered there. You seem to have a boatload of symptoms that are not in any disease I've seen, and certainly not in ALS. I would recommend you explore Health Anxiety with your GP.
Vincent
 
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