Need immediate help. No one can give me a diagnosis....

Posted by nzieli6486 @nzieli6486, Dec 2, 2022

This is going to be a long post but I'm out of options at this point. I'm in constant pain throughout my body, especially my neck and back.

I will preface this by saying around a year ago I got really really bad food poisoning and ended up with chronic diaharea that still persists till today. I've had stool sample studies and all came back clean but I just want to say this in case it had any resemblance.

One evening June 24th 2022 while sitting on the couch I felt strange and didn't feel normal. I stood up and my leg was numb and tingling but it wouldn't go away. Shortly after it slowed down and I noticed muscle twitching in my right calf. I did the worst possible thing and Googled my symptoms and went down the ALS rabbit hole and no less than a week after I had twitching all over my body, fatigue, etc you name it.

I went to a neurologist in early July and had a clinical with showed the following.

"Visual fields were full.
Funduscopic examination reveals no evidence of optic disc edema or retinal hemorrhages.
Pupils are equal, round, and reactive to light. No ptosis.
Extraocular movements are intact.
There is no facial numbness. Eye closure, cheek puff, jaw closure, jaw opening, and tongue protrusion are full.
Palate raised symmetrically and tongue protruded midline.
There is no hypoacusis to finger rub confrontation.
Sternocleidomastoid and trapezius strength were full.
MOTOR
Neck flexors 5
Neck extensors 5
Shoulder ER: (R): 5 (L): 5
Shoulder IR: (R): 5 (L): 5
Deltoids: (R): 5 (L): 5
Biceps: (R): 5 (L): 5
Triceps: (R): 5 (L): 5
Wrist extensors: (R): 5 (L): 5
Finger extensors: (R): 5 (L): 5
Wrist flexors: (R): 5 (L): 5
Finger flexors/FDP (R): 5 (L): 5
Abductor digiti minimi: (R): 5 (L): 5
First dorsal interosseous: (R): 5 (L): 5
Abductor Pollicis Brevis: (R): 5 (L): 5
Flexor Pollicis Longus: (R): 5 (L): 5
Hip Flexors: (R): 5 (L): 5
Hip abduction: (R): 5 (L): 5
Hip adduction: (R): 5 (L): 5
Quadriceps: (R): 5 (L): 5
Hamstrings: (R): 5 (L): 5
Tibialis anterior: (R): 5 (L): 5
Medial gastrocnemius: (R): 5 (L): 5
Muscle Tone and muscle bulk are normal in the upper and lower extremities. There are no fasciculations.
REFLEXES
Biceps: (R): 2+ (L): 2+
Brachioradialis: (R): 2+ (L): 2+
Triceps: (R): 3+ (L): 3+
Hoffman: (R): Present (L): Present
Patellar: (R): 3+ (L): 3+
Achilles: (R): 2+ (L): 2+
Babinski: (R): absent (L): absent"

Basically bilateral brisk reflexes in my knees and triceps. Positive hoffmans on left and right side.

Did an MRI which was clean
Was put on medication etc for depression anxiety
Was tested for deficiencies and had multiple CMP and CBC panels
Had a bunch of tests for antibodies done

Everything was clean

August had an EMG/NCS done
Following was found:
"Needle electrode examination was performed at right first dorsal interosseous, extensor indices proprius, pronator teres, biceps, triceps, extensor digitorum communis, cervical paraspinal muscles along with right tibialis anterior, gastrocnemius (medial head) andvastus lateralis. Fibrillations or positive sharp waves were not appreciated throughout the test. A few fasciculations were observed at right EIP muscle only. Features indicative of chronic motor axonal loss were observed at right triceps only.

Conclusion: This is an essentially normal EMG/NCT, which shows no EDX evidence of large fiber neuropathy or motor neuron disease."

To this day current symptoms and strange things happening:
If I flex my triceps they shake under the skin, like the nerve is firing off constantly and it can't contract fully.

If I flex any muscle, I tremble and shake violently.
When I am eating, when moving my arm away from my face it tremors. It's like the tricep and bicep are fighting against each other. It's not a tremor tremor, but more like a shaking sensation that I feel in my arm.

I wake up with internal vibrations and weird sensations

Both of my forearms are tight and are painful. I get tingling and numbness sometimes in my pinky and ring finger on both sides.
If I walk and swing my arms, I get tingling in the same fingers both sides.

My muscles are super tender especially the tendons.
The tendons on my legs and arms are extremely painful to touch if pressed.

I twitch 24/7 in both legs and other places randomly throughout the day.
When going to bed it's especially bad, but when I wake up I feel pretty ok until I start moving again and then it repeats.
The bottom of my feet a popcorn twitching constantly and overall I feel NOT NORMAL.

My neck is extremely painful to the point where I just am struggling everyday working or doing anything.

Other strange symptoms?:
1) If I flex my foot downward my calves go ballistic after releasing the stretch
2) If I flex my middle finger down or my ring finger on both hands, it starts to tremor.
3) When walking my legs feel heavy and awkward, although I can still walk just fine.
4) My buttocks especially get painful quick when I stand and am not moving….
5) When I flex out my fingers my whole arms feel like they're shaking for a second then it stops.
6) My fingers when stretched out, feel like they want to close inward,
like they're being stretched too far and they're getting pulled down

At the end of the day basically all of my muscles shake/tremble when flexed however, I have no clinical weakness and I don't feel weak usually, just fatigue, sore, and tight.

I'm in a sea of depression because I am struggling to handle this day to day. My medicine doesn't seem to be helping at all either…. don't know what to do.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

I’m so sorry you are going through this. My heart aches for all of us suffering with these odd issues that no one can diagnose. My legs do the same but I have major cognitive issues and my arms feel like my legs, so it might be different. It’s something with our nervous system, magnesium citrate at night has helped a lot but days suck.

REPLY
@143salmon

I’m so sorry you are going through this. My heart aches for all of us suffering with these odd issues that no one can diagnose. My legs do the same but I have major cognitive issues and my arms feel like my legs, so it might be different. It’s something with our nervous system, magnesium citrate at night has helped a lot but days suck.

Jump to this post

I don't have a lot of cognitive issues. Mainly brain fog. However when I move my head around I feel it popping all over and i get really dizzy quickly…. I'm beyond frustrated because right now living is constant pain.

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@nzieli6486

I don't have a lot of cognitive issues. Mainly brain fog. However when I move my head around I feel it popping all over and i get really dizzy quickly…. I'm beyond frustrated because right now living is constant pain.

Jump to this post

@nzieli6486 Hello and welcome to Connect. I see that your neurologist says your muscle tests are normal. Did they suggest any studies to look at your spine? Have you had a neck injury like a whiplash? If so, how long ago did it happen? Did you tell the neurologist about getting dizzy when you move your head around and the popping sensation?

Let me tell you why I'm asking these questions. I am a cervical spine surgery patient, and I had a whiplash injury that many years later caused my C5/C6 disc to herniate and rupture into the spinal canal and bones spurs grew along side it compressing my spinal cord. Because every signal from your brain to your body passes through the neck, anything can be affected if you have spinal cord compression there. I had muscle spasms that were independently rotating or tilting my C1 through C4 discs and it caused vertigo and dizziness severe enough to make me fall over when it was out of a normal position. I also have thoracic outlet syndrome which makes my neck too tight on one side, so it sets up that situation. It is possible to have spinal cord compression and not know it until it gets severe. I also had muscles jumping spontaneously in my legs, and I also worried about ALS. However, most of the time that is just fear of the unknown, so it's best not to suggest a serious problem to yourself for your brain to latch onto with fear. I am a Mayo patient and did talk to an ALS patient in a waiting area when I was there, and I could see muscles jumping very randomly in his arm all the time. In comparison, my muscle jumping was in a specific place and it did change when I changed my neck position, so that is a big clue. If you move your neck and cause or change symptoms or pain, there may be a cervical spine problem.

Has there been an MRI done of your brain, neck and spine? Other things that can also cause jumpy muscles are thyroid hormone levels that are too high (which also causes loose bowel movements) or dehydration. If that has already been assessed by your doctor, but not the spine, it may be worth asking the neurologist to authorize an MRI based on the symptoms when you move your neck.

The reason that rotated vertebrae can cause vertigo is because the vertebral arteries pass through the sides of those vertebrae on the way to the brain. They get stretched if a muscle spasm moves the bones and holds it there, so it alters part of the blood supply to the brain. If your neurologist doesn't consider the neck movement involvement, you can seek another opinion.

REPLY
@jenniferhunter

@nzieli6486 Hello and welcome to Connect. I see that your neurologist says your muscle tests are normal. Did they suggest any studies to look at your spine? Have you had a neck injury like a whiplash? If so, how long ago did it happen? Did you tell the neurologist about getting dizzy when you move your head around and the popping sensation?

Let me tell you why I'm asking these questions. I am a cervical spine surgery patient, and I had a whiplash injury that many years later caused my C5/C6 disc to herniate and rupture into the spinal canal and bones spurs grew along side it compressing my spinal cord. Because every signal from your brain to your body passes through the neck, anything can be affected if you have spinal cord compression there. I had muscle spasms that were independently rotating or tilting my C1 through C4 discs and it caused vertigo and dizziness severe enough to make me fall over when it was out of a normal position. I also have thoracic outlet syndrome which makes my neck too tight on one side, so it sets up that situation. It is possible to have spinal cord compression and not know it until it gets severe. I also had muscles jumping spontaneously in my legs, and I also worried about ALS. However, most of the time that is just fear of the unknown, so it's best not to suggest a serious problem to yourself for your brain to latch onto with fear. I am a Mayo patient and did talk to an ALS patient in a waiting area when I was there, and I could see muscles jumping very randomly in his arm all the time. In comparison, my muscle jumping was in a specific place and it did change when I changed my neck position, so that is a big clue. If you move your neck and cause or change symptoms or pain, there may be a cervical spine problem.

Has there been an MRI done of your brain, neck and spine? Other things that can also cause jumpy muscles are thyroid hormone levels that are too high (which also causes loose bowel movements) or dehydration. If that has already been assessed by your doctor, but not the spine, it may be worth asking the neurologist to authorize an MRI based on the symptoms when you move your neck.

The reason that rotated vertebrae can cause vertigo is because the vertebral arteries pass through the sides of those vertebrae on the way to the brain. They get stretched if a muscle spasm moves the bones and holds it there, so it alters part of the blood supply to the brain. If your neurologist doesn't consider the neck movement involvement, you can seek another opinion.

Jump to this post

So the neurologist I've been visiting is the ALS neurologist for my state and is highly regarded actually. We already did an MRI of the spine. Results are as follows.

. Brain and CSF Spaces: No acute ischemia, acute hemorrhage, hydrocephalus, or mass effect. No evidence of white matter disease. No evidence of abnormal intracranial mineralization or remote blood product deposition. No evidence of abnormal intracranial enhancement.

. Vasculature: Flow-related signal is maintained in the major intracranial arteries and dural venous sinuses.

. Sinonasal: Paranasal sinuses are aerated.

. Cranium and extracranial soft tissues: No marrow edema or replacement. Mastoids are aerated.

FINDINGS:

. Spinal cord: No abnormal intramedullary signal or enhancement Normal spinal cord contour.

. Vertebrae: Vertebral body heights are maintained.

. Alignment: No malalignment.

Degenerative changes:

. C2-3: No spinal canal stenosis or neural foraminal narrowing.

. C3-4: No spinal canal stenosis or neural foraminal narrowing.

. C4-5: No spinal canal stenosis or neural foraminal narrowing.

. C5-6: No spinal canal stenosis or neural foraminal narrowing.

. C6-7: No spinal canal stenosis or neural foraminal narrowing.

. C7-T1: No spinal canal stenosis or neural foraminal narrowing.

REPLY
@jenniferhunter

@nzieli6486 Hello and welcome to Connect. I see that your neurologist says your muscle tests are normal. Did they suggest any studies to look at your spine? Have you had a neck injury like a whiplash? If so, how long ago did it happen? Did you tell the neurologist about getting dizzy when you move your head around and the popping sensation?

Let me tell you why I'm asking these questions. I am a cervical spine surgery patient, and I had a whiplash injury that many years later caused my C5/C6 disc to herniate and rupture into the spinal canal and bones spurs grew along side it compressing my spinal cord. Because every signal from your brain to your body passes through the neck, anything can be affected if you have spinal cord compression there. I had muscle spasms that were independently rotating or tilting my C1 through C4 discs and it caused vertigo and dizziness severe enough to make me fall over when it was out of a normal position. I also have thoracic outlet syndrome which makes my neck too tight on one side, so it sets up that situation. It is possible to have spinal cord compression and not know it until it gets severe. I also had muscles jumping spontaneously in my legs, and I also worried about ALS. However, most of the time that is just fear of the unknown, so it's best not to suggest a serious problem to yourself for your brain to latch onto with fear. I am a Mayo patient and did talk to an ALS patient in a waiting area when I was there, and I could see muscles jumping very randomly in his arm all the time. In comparison, my muscle jumping was in a specific place and it did change when I changed my neck position, so that is a big clue. If you move your neck and cause or change symptoms or pain, there may be a cervical spine problem.

Has there been an MRI done of your brain, neck and spine? Other things that can also cause jumpy muscles are thyroid hormone levels that are too high (which also causes loose bowel movements) or dehydration. If that has already been assessed by your doctor, but not the spine, it may be worth asking the neurologist to authorize an MRI based on the symptoms when you move your neck.

The reason that rotated vertebrae can cause vertigo is because the vertebral arteries pass through the sides of those vertebrae on the way to the brain. They get stretched if a muscle spasm moves the bones and holds it there, so it alters part of the blood supply to the brain. If your neurologist doesn't consider the neck movement involvement, you can seek another opinion.

Jump to this post

Some of the things that push me away from anything serious even though it doesn't feel like that, is the fact that a lot of my symptoms I can feel. Pain, popcorn twitches on the bottom of my feet (or that's how it feels) muscle pain, tenderness, soreness etc. However, I'm still super concerned because I don't feel normal and haven't felt normal in 5+ months. Physically, cognitively etc. I'm overly jumpy sometimes, and I always feel on edge as well….

REPLY

@nzieli6486
Hello. I’m sorry you have all this going on.
Have you seen a good spine Dr/surgeon? Perhaps something in your neck spine? I’m not a Dr but perhaps a spine Dr is a good avenue for you. Perhaps you have a buildup of calcium or something on your spine.
Be persistent! After a long illness last year, and being told nothing wrong with me, I persisted and finally got better. It took me most of the year to walk again and doing normal things. My condition is different from yours, but don’t give up! Also, I found that vitamins D, calcium magnesium zinc helped a lot.

REPLY

I am so sorry that you are feeling ill. I experienced some of your symptoms and found magnesium glycinate to be helpful. The glycinate form doesn’t have the GI effects that magnesium citrate has. If you take it at bedtime, it also helps with sleep. Best wishes as you seek answers.

REPLY

So sorry you are going through this. I had similar symptoms and finally at the age of 50 I was diagnosed with Hereditary Nerve Pressure Palsy. Must do genetic testing to find out what is going on and I would highly suggest you see an Infectious Disease Doctor for a parasite. I started having crazy symptoms again in 2018 and the doctors could not figure it out! So I saw Infectious disease and found out I had CLL and Latent TB!!!
Listen to your body and never give up! Be persistent and if you have to keep changing doctors, do so. Before I was diagnosed with HNPP they told me to get therapy because there was nothing wrong with me. I was fortunate to find a fantastic Neurologist who finally gave me the diagnosis. Good luck and keep going!

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Did your symptoms start in proximity to the Covid vaccine? A number of us have neurological injuries from the vaccine that can cause muscle twitches and spasms. In my case, I have sensory and motor nerve damage that also caused foot drop, leg weakness, and balance issues. The spinal cord region was also affected because sitting greatly aggravated the numbness and nerve pain in my feet.
My EMG did not become abnormal until 6 months post vaccine, but the neurological symptoms began within 2 weeks. My ANA titer increased 4-fold at the time my neurological symptoms were peaking. Many patients have small fiber neuropathy that doesn't show up on an EMG. In my experience, the neurologists won't ask about the timing of your vaccine. The patient has to raise the issue. My neurologist agrees that the likely cause of my peripheral neuropathy was the vaccine. I'm much better now at 19 months.

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@nzieli6486 – You mentioned that all your stool tests have been negative, but since you still have diarrhea have you had a colonoscopy and even endoscopy to look for any type of colitis or other intestinal damage?
Chronic diarrhea also causes electrolyte abnormalities that could affect muscle function.
Electrolyte and other mineral deficiencies are not always obvious unless tested for.
I think someone also mentioned ANA testing for autoimmune illness.

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