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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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Please check for Superficial Siderosis. Mayo helped me with that. Ask for Dr. Kumar and Dr. Marsh.
Have you looked into fibromyalgia or function neurological disorder? These sound like some of my symptoms. Have you tried a larger hospital like Cleveland clinic? Best of luck to you.
I could have written your post! I’ve experienced all the wacky symptoms you note and more. Were I to keep looking for an answer, that task would have hyjacked my entire life. I’m 83 now, still having the bizarre sensations, cramping limbs, burning neuropathy — all over as you note. There are reasons for such sensations, and at some point you have to know that the doctors don’t know any more than you do about “why” it’s as it is, and know that this is what you have got to live with. When you accept that, you will feel better. Bring the crazy activity you experience along with you where ever and you will find yourself implementing some compromises and clever ideas to get through each day!
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3 ReactionsWere you ever tested by a LYME LITERATE doctor to get infectious disease dx’s? Your story of looking and trying all forms of help is very similar and sounds almost identical to mine where I struggled for 12 years only to find out it was a tick bite.
To date & 35 yrs later I still have severe neurological symptoms and no one here wants to consider Lyme. We are now in Florida (worst place to be for gold star medicine) and it’s a waste of time to be here medical wise for my issues. I’m flying to Hyde Park NY to visit my Lyme clinic in the next two weeks for more testing. I’m at the end now of the Lyme spectrum and it’s similar to long haul Covid. Best of luck. This way of life is no life at all!
Clearwater Florida
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3 ReactionsAlmost all of your symptoms sound very much like mine. I have been diagnosed with Fibromyalgia. I’m not always convinced that is what it is, nobody has ever really found much wrong with any of my tests. I was on gabapentin and then Lyrica and was forced to stop taking because of memory and cognitive decline. My twitching has considerably slow after stopping the medication, there were times my phone would fly out of my hand. There are many days of frustration and often Dr’s look like they want to “run” when they see you coming. It is hard for family and friends to understand and believe you. There are many interesting books on the subject and the Mayo has an excellent Fybro clinic. Best of luck with your diagnosis, please consider checking into fibromyalgia, it’s tough to get a diagnosis but it’s a start.
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2 ReactionsI have mostly excepted my situation and have stopped pursuing any type of diagnosis. I just hang back and except it.
I have had Fibromyalgia 23 yrs. It was diagnosed by process of excluding other illnesses, as u said. It was caused by a hard fall and neck surgery nerve damage pain. Lots of family stress also. My blood wk was all normal, but I had pulsing burning pain in bk of neck, upper spine and body aches all over, 24/7 for far more than three mos. I went to a Rheumatologist who diagnosed it. In Fibro, the Central Nervous System wh is the brain and spinal cord, crank out pain signals to the whole body. Getting sleep is so hard. It’s really an evil disease with no cure. But I have studied it from every angle by listening to Dr Ginevra Lipton on YouTube who herself has Fibro. Her teachings to greatly lower Simple carbs (Google examples), omit desserts, candy, chocolate, sweet juices (all sugary stuff and white carbs fire up pain), fermented foods,food additives and preservatives, dyes, omit spicy foods, and certainly msg (monosodium glutamate), and yeast extract, has hugely helped reduce pain. Also omit beef bc it’s very difficult to digest. It’s got stuck in my brother’s colon and he ended up having to have a lot of his colon removed and a colostomy bag instead. Two days later he aspirated into his lung in his sleep and died. With Fibro food moves a lot more slowly thru the intestines so nuts, seeds, fiber veggies and fiber fruits are the perfect diet for ppl with Fibro. Omit alcohol bc it also slows the intestines. I sprinkle a little Yerbe Prima Prebiotic Fiber on my food every other day.and drink a lot of water.
For pain relief do bath soaks in Epsom’s salt before bedtime. See ur Dr about getting a medical cannabis permit card. Take high done CBD am and pm. If u can’t afford the fees required for a Cannabis card, but some Hemp CBD which is legal in ev state. CBD does not cause a high. It’s relaxing and calming. For sleep, check out two supplements - Sleep Thru and Back to Sleep by Gaia Herbs. I hope this info will be a help.
What did your small fiber biopsy show? Do you have SFN?
It appears you have gone thru a lot including a lot of testing. I think the approach most docs take on things like this is a process of elimination. They rule things out until there is nothing left.
I hope you are feeling ok and you get some resolve on your condition. God be with you!