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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franksgirl210 | @franksgirl210 | Apr 9, 2022

Have any of your doctors mentioned Benign Fasciculation Syndrome? It wouldn't explain all of your symptoms, but would explain the twitching, burning, tingling sensations as well as cramping. I've had it for the last 9 months, following a bad viral illness. It is all different places in my body, and moves around. Sometimes it follows times of stress as well. Mayo has a benign fasciculation forum on here as well. It might be worth looking into.

drigg97 | @drigg97 | Apr 16, 2022

In reply to @jenniferhunter "@drigg97 Hello Drigg, from what I understand about Shingles is that it will cause blisters on..." + (show)

@jenniferhunter

@drigg97 Hello Drigg, from what I understand about Shingles is that it will cause blisters on the skin surface that follow the pathways of the spinal nerves from the dermatomes. The dermatome map shows where every nerve that exits the spinal cord travels when it gets to the surface of the body.

In this link, you can see a dermatome map. https://www.medicalnewstoday.com/articles/what-are-dermatomes

Could you explain more specifically what the issues are with your spine? Do you have compression of the nerves that exit between the vertebrae? Do you have spinal cord compression? Where are the bone spurs; are they pressing into anything?

A spine problem alone can cause pain, and I would think that adding shingles to that and inflaming nerves would only make that worse. If you do share information from an imaging report here, please remove any identifying information about yourself first.

I can tell you my experience with spinal cord compression in my neck caused crazy pains all over my body, and that confused a lot of spine surgeons before I got to Mayo. It was a reason that I was refused surgical help elsewhere. I also had muscle twitches in my legs and arms. I am concerned about your low oxygen. Are you monitoring that with a pulse oxymeter? Do you have asthma or allergies that could be causing some of that? Would you consider getting a different neurosurgery opinion? It concerns me to hear a surgeon say all the issues in your neck cannot be causing your weird sensations, because that is what I experienced for 2 years before I found a surgeon at Mayo who understood this.

Here is a link to medical literature that I found because I looked up a term in literature co-authored by a Mayo neurosurgeon. It told me everything that the other surgeons missed, and so I wrote to that Mayo surgeon, Dr. Jeremy Fogelson, and asked for an appointment. That was my 6th surgical opinion and it was the only one that was correct. All the others could see the problem, but didn't understand how to connect it to my symptoms.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/

If you wish to seek care at Mayo Clinic, you can get started with this link. http://mayocl.in/1mtmR63

Navigating a spine problem can be very complicated, and I may be able to help you understand some of the terminology. Will you consider getting another opinion?

Jump to this post

Hello Jenifer,

Sorry for the late reply. Thank you for sharing your story, it is very interesting and possibly a helpful clue. I’m sending over a cervical neck report, please see what you think about it. I am absolutely open to getting another opinion, Dr. Fogelson sounds great!

drigg97 | @drigg97 | Apr 16, 2022

In reply to @frattmaa "First of all you described small fiber sensory neuropathy along with autonomic neuropathy. You are experiencing..." + (show)

Wow, I am so sorry that you have been going through this for 13 years. Besides a slow heartbeat what other atomic nervous system symptoms do you have?

drigg97 | @drigg97 | Apr 16, 2022

In reply to @rwinney "Hello @drigg97, welcome to Connect. Yes indeed, I have had these kind of symptoms together. I'm..." + (show)

Hello Jennifer and thank you for the encouraging words.
I did watch the video and. it does resonate.
I have took the Small Fiber Neuropathy test and I am waiting for the results. I will keep you posted on what I find out in the upcoming days. I’m just curious about your diagnosis, do you have atomic symptoms? How about twitching? Thank you

drigg97 | @drigg97 | Apr 16, 2022

In reply to @stevegrinstead "Please check for a dural leak" + (show)

Do you think a dural leak could cause all these symptoms?

drigg97 | @drigg97 | Apr 16, 2022

In reply to @rwinney "@drigg97 Hi. I was not fully familiar with Transverse Myelitis so I did a little more..." + (show)

My neurologist thinks that all the symptoms could be transverse myelitis except for the facial burning and tingling/twitching. To be honest I have puzzled all of the neurologists I have seen so far. They just cannot quite put their finger on a particular diagnosis that fits everything

drigg97 | @drigg97 | Apr 16, 2022

In reply to @franksgirl210 "Have any of your doctors mentioned Benign Fasciculation Syndrome? It wouldn't explain all of your symptoms,..." + (show)

No none of my neurologist have mentioned BSF

frattmaa | @frattmaa | Apr 16, 2022

In reply to @drigg97 "Wow, I am so sorry that you have been going through this for 13 years. Besides..." + (show)

Tons of pain from my head to my toes, my blood pressure drops to 60/40 and I pass out, it’s affecting my pupils ( dilate in the sun, constrict in the dark. Often it’s just my left eye), it’s attacking my kidneys and bladder so I can hardly pee, constant muscle twitching and I have times where it feels like something is crawling on my legs. I have zero appitite and have lost 30lbs since January.

Jennifer, Volunteer Mentor | @jenniferhunter | Apr 17, 2022

In reply to @drigg97 "Hello Jenifer, Sorry for the late reply. Thank you for sharing your story, it is very..." + (show)

@drigg97 I think a spine neurosurgery consult would be a good idea. You do have several levels of involvement and more than I had on my MRI reports. You probably have to wait awhile to see a good surgeon, so you may want to start that process.

Here are the signs of spine issues:
Straightening of normal neck curvature which can also be from muscle spasms related to spine. The curvature can get reversed as this progresses and your report indicates the beginning of reversal. Spondylolisthesis is some shifting and sliding of the vertebrae past each other. If that is too great, it would disqualify a patient for disc replacement. You do have enough spine involvement to cause pain.

C1/C2 some arthritis and trace fluid buildup

It sounds like the issues are worse on the left side with several levels of stenosis narrowing in the foramen where the nerve roots exit the spine.

Loss of disc height at C5/C6 , moderate central canal narrowing at C5/C6
C6-7 damaged disc with bone spurs causing mild central canal narrowing

The good news is that there is not damage indicated in spinal cord for the signal intensity. What happens with damage from spinal cord compression is the nerve cells die within the spinal cord and dissolve, so are absent which shows up as a whitish area inside the spinal cord. Early myelopathy (damage) doesn't always show on MRI, and mine did not. It is better to catch this early before permanent damage happens. It may also take awhile to wait for a first appointment, and depending on how fast this is progressing, you could be worse by then. When I first applied to be seen at Mayo, I was told it may take 3 months to get in. Because Dr. Fogelson had a cancellation, he offered me an appointment 6 weeks after I applied. I didn't get a lot of notice, less than a week, but I found a hotel and got reservations right away. If you apply to Mayo, you might want to figure out what travel arrangements and lodging you want so you will be ready to jump on it if you get called to fill a spot.

If you would like to apply to Mayo Clinic at any campus, you may use this link to get started. http://mayocl.in/1mtmR63
You really would like Dr. Fogelson as he is friendly and down to earth. He is pretty busy too and takes a lot of big spinal deformity cases, so I hope you can get an appointment with him.

Are you keeping a journal and tracking your pain symptoms so you can tell how fast they are changing?

drigg97 | @drigg97 | Apr 17, 2022

Thank you for the helpful information. I had a appointment with a excellent neurosurgeon at Cornell university in New York but I canceled because the first neurosurgeon I seen told me there were not issues in my spine that would be causing my symptoms. It’s hard to know what to believe. I do have my studies under review by Mayo Clinic in Rochester so maybe they will come up with something. Only other thing that points to something other than my cervical issues is the the raised proteins and albumin in my CSF and brisk reflexes. Just wish I knew what direction to go.

Thank you for your help!