Unexplained Sensations and muscle twitching

Posted by drigg97 @drigg97, Apr 7, 2022

My journey started about four months ago (December 07, 2021). I had a bump and blister on my neck next to my spine , had an MRI done, and the report said it was probably cancer. The small blistery patch was diagnosed as shingles and was treated with antivirus meds. It soon disappeared. After three weeks of extreme worrying about the MRI report they found out is was not cancer and just a artifact on the imaging.
Then a couple weeks later (January 15, 2022) my legs started prickling, itching (not a physical itch) or tingling ( a very unpleasant sensation that is hard to describe) especially when I wore pants or any type of material was touching them. I also had burning on my back, shoulder and arm. The itching and tingling sensation soon spread from my legs to my arms, torso and genitalia . These sensations were unbearable, so my family physician prescribed me gabapentin which helped my a lot! Since then I have had to up my dosage x2 from 900mg to 1800mg.
Follow up MRIs showed that my neck was riddled with arthritis, stenosis, bone spurs and other degeneration. My family practitioner suspected this degeneration could be causing my sensations and sent me to the neurosurgeon. He noted that my history of psoriatic arthritis may have contributed to the problems in my neck. After going to the neurosurgeon he said that the degeneration in my neck was not causing the weird sensations and referred me to a neurologist.
Several neurologists have did extensive work ups and have not found anything on my brain or spinal cord imaging that would explain the sensations. They did do a spinal tap which showed raised CSF proteins at 95 MG/UL, with no white blood cells and no banding that would indicate multiple sclerosis. The opening pressure during the Lumbar puncture was 25.5 which is a little high, but was attributed to a traumatic tap. I do have brisk reflexes throughout . EMG’s of my leg and arm have come back normal. My diagnosis is Transverse Myelitis with possible CNS inflammation but doesn’t seem to fit. I have a small fiber biopsy scheduled in May.
Now I have muscle twitching throughout my whole body.
I just finished my first real treatment today for my conditions which was 3 doses of methylprednisone 1000mg pulse treatment infusions. I have high hopes for this treatment. The sensations feel to be about the same and the twitching may be a little better but is still somewhat constant. They concern me the most.
I have no problems with grip or walking.

Other symptoms :
Face pins and needles ,Burning & Tightness
Muscle knots in legs
Blurred Vision
Sexual Disfunction
Low Oxygen
Slow heart rate
Some slowed sweating
Muscle twitching in arms, legs, back, neck buttocks, chin

Has anyone had these kind of symptoms together?
Can’t find any conditions that have all of this crazy stuff together.
It’s really taking a toll on me and the family trying to find out, any feed back would be appreciated!

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@sharing

Have had much the same unexplained symptoms. Have decided at the age of 76 and with a host of other yet to be explained pains that come and go but the pain in my right side, waist down, when I woke this morning panicked me. First time so bad it nearly took me down. My doctor said I have some stenosis in the lumbar area. I am afraid of any surgeries. But this is the first such extreme pain.

Had trouble with right side for a week now and pain gone now but lurking in the background, lol!

I get twitches, etc., in that leg often and they are unpredictable. I thank goodness I have so much “stuff” in the house, I manage to not hit the tile floor. Yet.

Glad I read this….but not glad you are suffering so much.

Peace and love to you.

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You should seek out physician therapy for your back issue before you try anything else. Surgery is your last resort but do you have a diagnosis?

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I recently was diagnosed with BFS. Twitching in the right hand to the calves to many other areas of my body. Like you, I have no loss of strength and can walk for miles without issue but have lost weight and my BP fluctuates a lot.
I am not on meds yet and have had MRI’s, EMG’s and CT Scans. So far, nothing conclusive but still have the twitching. It consumes my thoughts which is destructive. I don’t feel myself anymore.

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@shiner3190

I recently was diagnosed with BFS. Twitching in the right hand to the calves to many other areas of my body. Like you, I have no loss of strength and can walk for miles without issue but have lost weight and my BP fluctuates a lot.
I am not on meds yet and have had MRI’s, EMG’s and CT Scans. So far, nothing conclusive but still have the twitching. It consumes my thoughts which is destructive. I don’t feel myself anymore.

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Yes have had the same for 2 years. Thought I had a nerve disease all tests came back normal. Exercise and diet change helped. But I still have them just not as bad. I feel my thoughts did this to me. When u stress and think about bad things like fear of getting sick.

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I am so sorry for all your symptoms with no apparent resolutions. Have you considered a physician or self referral to a larger medical facility for a thorough work-up, ie Mayo, the Research Triangle (my favorite), John Hopkins, Temple etc. These places seem to be a little more Medically intellectual and may go deeper into differential diagnoses. I find most physicians prefer straightforward issues with easy fixes and care not too much for the complex cases.

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I am wondering if your doctor has checked your vitamin & electrolyte levels? Do you tend a garden; thinking of pesticide exposure. I worked with a doctor who emphatically stated that it is always prudent to check the diet & vitamin/lytes levels. Twitching especially comes to mind when I think of vitamin deficiencies. I'm a retired nurse, btw. Hope you find a solution.

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@kndaustin71

I am so sorry for all your symptoms with no apparent resolutions. Have you considered a physician or self referral to a larger medical facility for a thorough work-up, ie Mayo, the Research Triangle (my favorite), John Hopkins, Temple etc. These places seem to be a little more Medically intellectual and may go deeper into differential diagnoses. I find most physicians prefer straightforward issues with easy fixes and care not too much for the complex cases.

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I contacted the Mayo. I sent a worksheet with all my symptoms and recent history to them under their suggestion. A week later, I received a cover letter style email apologizing that they didn’t have enough resource to take on my issues. Couldn’t believe it! I have since sought assistance with a local neurologist, my family doc, my cardiologist and my gastro doc. I have had many tests including an EMG for nerves and muscles, MRI of my neck, upper and lower spine, blood tests and thyroid test, and all are normal. I still have a MRI of my head and an MRA of my neck as well as a CT scan of my abdomen scheduled in the next couple days. Lastly, I do have a follow up with a neuropathy specialist at the local university hospital network. So, think I have a lot of test data but it really doesn’t explain why or how I got BFS. Some suggest it may be a reaction to a virus I had a few weeks prior to me recognizing my thumb twitch but can’t say for sure.

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@silverwolf66

I am wondering if your doctor has checked your vitamin & electrolyte levels? Do you tend a garden; thinking of pesticide exposure. I worked with a doctor who emphatically stated that it is always prudent to check the diet & vitamin/lytes levels. Twitching especially comes to mind when I think of vitamin deficiencies. I'm a retired nurse, btw. Hope you find a solution.

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I do help my wife garden and have applied pesticides but very infrequent and not a lot at a time. I think the exposure would have to be intense to experience what I am going thru?

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Has anyone mentioned BFS to you? Many of your symptoms are consistent to those that have BFS. Others could be brought on by anxiety which is certainly understandable considering what you have gone thru.
The good news is as annoying as BFS can be, it is not harmful. It can slow you down and sometimes give you a feeling of muscle weakness or cramping but it is not harmful. It can also come and go and can create twitching at any part of your body. No area is off limits.
I have been diagnosed for a couple weeks. It started with my thumb and index finger, to my other hand, went to my calves, to my thighs, to my left eye and even to the side of my body. The constant is my calves especially my left calf. All the others are now random.

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@silverwolf66

I am wondering if your doctor has checked your vitamin & electrolyte levels? Do you tend a garden; thinking of pesticide exposure. I worked with a doctor who emphatically stated that it is always prudent to check the diet & vitamin/lytes levels. Twitching especially comes to mind when I think of vitamin deficiencies. I'm a retired nurse, btw. Hope you find a solution.

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Retired nurse as well and I have the exact same thoughts. If you're retired then you have been around when physicians did differential diagnoses in order to drill down on the real issue. I agree 100%

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@kndaustin71

Retired nurse as well and I have the exact same thoughts. If you're retired then you have been around when physicians did differential diagnoses in order to drill down on the real issue. I agree 100%

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Yes!! I held a care provider jib in an Alaska Bush Village where I was taught to do that. It just makes sense. No stand alone diagnosis right at the start (some exceptions) are “it”—that’s why we examine, test & consult.

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