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.

@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.

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me too no diagnoisis for me either

REPLY

I’m sorry you have traveled such a long road. You might try the various symptom checkers that are used by Mayo Clinic and others. By putting in your symptoms, the checker will give you a list of several conditions that fit those symptoms. Good luck and please let us know how you are doing.

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@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.

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The Magnesium Citrate is that the liquid or tablet? I know that I take Magnesium Glycinate helps me sleep.

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@lengel

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.

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I take Magnesium Glycinate at bed time also.

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Hi. I read the responses to your post and they have all been excellent. Some may be a solution for improvement. I'd try them bc I have had results from incorporating several in my own self-care.
However, you have had definitive tests showing no problems found. Your tests have ruled out many major potential causes of your symptoms. If I were you, at the point you're at, I'd go to a hospital or specialty clinic that is peer recognized as one of the top in the country. There are several. The button to contact Mayo Clinic is on this site. They are typically regarded at #1. You can contact any other *top* facility near you by calling the facility and asking for the New Patient dept. Let them decide what specialty you need an appointment with. They may determine that by a review of your medical records which you will send them upon their request or by a follow up phone interview. The bottom line of the causes of your problem may fall into any number of specialties. But a top hospital, where most people go when they don't have answers from the average medical community, investigates patient's symptoms using their own approach. If you had something simple or common, the likelihood is it would be identified by now. Top academic hospitals have seen the rare, the unusual and the complex before. Although since we entered into COVID-19 territory, there's a learning curve underway even at that level of knowledge. But when answers don't come from good medical care at the average level, I believe you need to step up to the top level of academic excellence.
One suggestion: you can simply summarize that you had such-and-such test and the results were normal. The details are not important in normal findings. Only abnormalities need to be noted.
Wishing you the best.

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Hello @nzieli6486 - welcome. My goodness, I am so sorry to learn about your situation. You bring me back to my days of chaos in my body with no doctor having a clue of what the heck was going on. I'm pleased to see you have a good deal of responses from members and a lot to process.

I completely understand how confusing and tormenting a plethora of undiagnosed symptoms can be. You mention having depression, which is understandable in your case. As is anxiety, stress and fear. All these emotions amp up the Central Nervous System more as a result of physical symptoms and fuels the fire. Doctor hopping and inconclusive or negative test results continue to fuel the fire. Panic over what's wrong and not knowing fuels the fire, and on and on the "cycle of pain" goes making everything worse.

@rsfcowgirl has great advice about going to a large teaching hospital, university or clinic such as Mayo or Cleveland Clinics. Do you have any near you? Here is a direct link to apply to Mayo Clinic:

- http://mayocl.in/1mtmR63

Has your neurologist given you a skin punch biopsy yet to rule out Small Fiber Neuropathy? Neuropathies cause many of the symptoms you are experiencing. Also, your symptoms sound that of a central nervous system disorder called Central Sensitization Syndrome (CSS). I'm no doctor, but certainly do see the signs. CSS is something that falls last on the list of diagnoses, once ALL possible causes have been ruled out and there's nothing left but learning and managing.

What is your next step, my friend? Do you think applying to a large teaching hospital is your best bet?

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