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Unexplained Sensations and muscle twitching
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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Prickling, tingling, burning, sensations and twitching everywhere
Please check for a dural leak
Hello @drigg97, welcome to Connect. Yes indeed, I have had these kind of symptoms together. I'm sorry for what you have been experiencing. Your poor central nervous system is in an uproar. You have had quite a bit happening in just 4 months, you must be exhausted.
I noticed you have also posted in the Neuropathy group which is where I started on Connect a few years back, having Small Fiber Neuropathy. I'm happy to know you are scheduled for a skin biopsy in May. It's best to rule out possible cause. Here, you can find other members neuropathy journeys:
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
While we wait for members to respond, I will share this video from Mayo Clinic's Dr. Sletten presenting on Central Sensitization Syndrome (CSS):
I have CSS. It is what tied all my "stuff" together after many years of uncertainty. Having such a wide array of symptoms, or "popcorn symptoms" as Dr. Sletten calls it, is without a doubt taxing physically and emotionally. It's good to learn as much as you can as you continue to navigate further.
You're still early in the game of diagnosing and attempting to find treatments that work. I hope prednisone infusions bring you relief. I greatly understand the toll this all takes on a person and their family. Please keep hope alive!
Do you mind letting me know your thoughts on the video and if it resonates with you? I am here to help with any questions you may have.
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3 Reactions@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?
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4 ReactionsI have had some of these same symptoms. I was originally diagnosed with VitaminB12 deficiency and later with B6 toxicity. If you have been taking B6 supplements, check out the website: http://www.understandingb6toxicity.com and their Facebook group. Many people describe symptoms close to yours.
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2 Reactions@terrilea57 Good mention! I also had B12 deficiency which resulted in SFN.
B12 deficiency can really create a variety of symptoms, can't it? How are you doing presently? Have you been able to regulate B12 and B6?
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2 ReactionsFirst of all you described small fiber sensory neuropathy along with autonomic neuropathy. You are experiencing the same issues I’ve had for 13 years. Because it’s slowing your heart rate it shows the autonomic neuropathy is killing the nerves in the top part of your heart. My heart is so bad I have a pacemaker and am now on hospice. These neuropathy’s usually occur together. It’s unfortunate but this is the gift that keeps on giving ( sarcasm). What has helped me with the symptoms is medical marijuana gummy bears, and Bupropn HCL 300mg XL and Kratom. It was by accident I was placed on this medication and it has taken my symptoms from a 10 to a 3. I’ve deteriorated bad enough I am now on hospice.
Most physicians don’t have a clue what this disease is like and how horrible it affects every aspect of your life. Unfortunately there is no cure and the only thing you can do is treat the symptoms.
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1 ReactionMy b12 has gotten into the normal range with supplements and I am no longer taking any b6 supplements. I haven’t had my b6 numbers retaken… but I have heard it takes some time for the small fiber neuropathy to resolve. I am concentrating on staying hydrated and keeping my food b6 within the rda which I have heard helps. My symptoms come and go but overall are not as intense.
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2 Reactions@terrilea57 That's great new. I'm so glad to hear you have regulated your levels. It's amazing how food (and water) is medicine. Keep concentrating. Good job!!
My neurologist told me my nerves might possibly regenerate within a few years from the deficiency, after proper supplementation. So, yes it can take time. Thanks for sharing that you are slowing feeling less intense symptoms . Keep hope alive!
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1 Reaction@drigg97 Hi. I was not fully familiar with Transverse Myelitis so I did a little more researching. I'm sure you are very familiar with it at this point, but I've attached a Mayo Clinic link for further explanation:
- https://www.mayoclinic.org/diseases-conditions/transverse-myelitis/symptoms-causes/syc-20354726
It seems that most of the symptoms you describe are associated with this diagnosis. Do you not feel your symptoms together add up to Transverse Myelitis? I'm curious, does your neurologist not feel Transverse Myelitis is responsible for all of your symptoms?
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