A little over two years ago I began having severe pain in my pelvic region, along with numbness, difficulty urinating, and sexual dysfunction. Many, many doctors and countless invasive and inconclusive tests eventually led me to a neurologist. The neurologist that examined me uncovered some worrisome test results, to include a positive Hoffman's sign, hyperactive knee reflexes, and a uncommon reflex in my elbow that I can't recall, prompting an MRI. At that point, I was pretty sure that I was going to be diagnosed with MS. But, the MRI was negative for tumors, lesions, etc. The doctors had no explanation for the cause of my pain. I was told that I could be rest assured that all of the "scary" things had been ruled out, wished good luck in the journey to find the cause, and referred to a pain management doctor who has been treating me since. I had convinced myself that I had a pelvic floor dysfunction, or something like that until recently.
That is because while my pain has been managed, and has even improved over time, I have been having all sorts of weird symptoms the past couple of months. They include: numbness, burning, pins/needles pain in my hands, arms, feet and sometimes my chest (intensified by heat), heat intolerance, night sweats, shaky legs and difficulty maintaining balance descending stairs (not going up), occasional difficulty urinating, gastrointestinal issues, constant fatigue and daytime sleepiness, memory and concentration problems, and aphasia. Last week while eating dinner my back ignited with intense needle-like pain that lasted 15 minutes. It hasn't happened again. I still have sexual dysfunction and the fatigue and depression has been constant for years. On several occasions, my legs have acted like they don't want to move. My mind is telling them to, but the best that they can do is minimal movement. This has been sporadic and usually doesn't last more than 15-20 minutes.
Research on MS shows some similarities with symptoms, but some don't seem to fit, mainly because of the short duration. And there is the fact that no lesions showed up on the brain MRI two years ago. But I also understand that MS can primarily effect the spinal cord, so perhaps the cause can be found there? Note that I had bacterial meningitis when I was 3 years old, and nearly didn't recover. I often wonder if that illness could have long-term effects.
If you made it this far, thanks for reading. If you have any thoughts on my condition or have similar experiences, I would appreciate hearing from you. The next time I visit a physician for this, I want to be prepared to ask the right questions. If I have learned anything over the past two years of seeking medical help for my chronic condition, its that you have be your own advocate.
You need an MRI scan of your spine and neck. Just a guess, you must have some brain lesions with such symptoms if it is MS.
On the other hand all of these symptoms can be vitamin B12, iron deficiency and thyroid problems. Did you have any blood test results? Lifestyle? Please share.
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
I started having symptoms 10 years ago: dizziness, stiff legs, pins and needles, you name it. Then, I did something I wish I never did: I consulted google. Of course, I instantly jumped to an MS possibility. About a year later, after feeling like my life was falling apart, I got an MRI and showed no signs of MS or anything else. Doctors basically told me I was a healthy young man and I need to excercise more and maybe see a therapist for anxiety disorder.
10 years later, I’m sitting here with the same laundry list of unexplained symptoms. They come and go over the years, but seem to get much worse when I start researching.
I hope you find the answers you’re looking for through your doctor. Just be up front with them and let them know your symptoms are keeping you from living a normal life. Make it seem urgent. I’ve noticed that if you downplay it in the office, they tend to just dismiss you. You’re definitely not alone. Thousands of us sit here undiagnosed and confused. Best of luck in your journey.
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