scared of spinal lesion, or just BFS?

[Livelaughlove3885]

Hi everyone, i am a bit scared, not of MS, but of other motor neuron disorders really... please tell me does anyone else experience what i go through. So, a few years ago, i was in the best shape of my life, working out daily and lifting weights, eating clean, then i got norovirus (and also my test was equivocal for salmonella) and then BAM my life drastically changed. I got fasiculations and lots of pain. I went to a neurologist. My EMG was normal and i had hyperreflexia on exam. He ordered MRI of brain and cervical spine (my dad, aunt, cousin have MS) but when i went to get the MRI insurance only approved the brain and not the spine, so I only got the MRI of my brain done and that was normal. So the neurologist said i had post-infectious benign fasiculation syndrome and eventually it should stop. Well here i am 18 months later and i still have fasiculations and worsening body problems. My hips have been sore for over a year and i have difficulty getting up from sitting and with walking in the mornings, at night, or if i have been sitting too long, or if i walk too long they hurt. Also, as soon as i am done going on a casual 15 minute walk, both hips twitch like crazy, a fast beating twitch which is different than the other twitching i get which is mostly in my biceps, shoulderblade/spine area and chest area. A lot of times, my chest hurts and i get deep breathing, but also my neck and back get sore a lot. I read about doing spinal stenosis physical therapy on my own which i have been doing daily and i no longer am getting the stabbing pains (which i guess is nerve pain?) and also my neck and back have significantly improved so i do these stretches daily. Anyway my doc says i need to go back to the neurologist because 18 months is too long to still be having this problem. I don't actually jerk body parts and there is no weakness in my hands or feet, all the problems seem to be in areas close to the trunk. So i kind of think maybe i do have spinal stenosis or compression of some kind and that is causing the hip pain and fasiculations, because i notice that twisting of my spine triggers the fasics in always the same spots depending which way i bend. I never had any imaging done of my back or spine (but i do have mild thoracic dextroscoliosis). Oh, i was also checked for lymes, B-12, electrolytes, magnesium, ANA, rheumatoid factor, and everything came back normal. I had magnesium checked twice and it is fine. I never get cramping, only twitching. My biggest fear is that the muscles are dying off in my hips and that whatever is bothering me is also going to affect my respiratory muscles. I am afraid i have a lesion or something on my spine that is causing all this. But this has been ongoing for 18 months, and i would think i would be paralyzed by now if something like that was going on. Although, i am getting worse, but it is slow moving. Or maybe just everything is a coincidence and this happens with age, because i am 36. I have an appt with neuro on oct 21. ADVICE PLEASE!!!!

[lyndacarol]

Hi LLL3885,
In my opinion, all the symptoms you have related to us over time are NOT just coincidences, and these things do not just happen with age (and certainly not at age 36!).

With your plea for "ADVICE PLEASE!" I have questions and comments to offer:

About a year ago, you said you had blood work for vitamin deficiency testing and everything came back normal. What screening for a possible vitamin B12 deficiency was done? Had you taken vitamin B supplements any time before the testing? Do you have your actual number values for the tests? Have the several members of your family who have an MS diagnosis been tested for a possible B12 deficiency?

Your symptoms are consistent with B12 deficiency. Any person at any age can develop this deficiency. It seems possible to me that there may be a familial interruption along the complicated B12 metabolism pathway – perhaps a failure to produce one of the 15 proteins required for absorption into the bloodstream, or the protein transporter required to take B12 into the cells.

Perhaps you and your neuro can plan at this month's appointment to investigate this possibility. Could he be persuaded to order the HoloTc test? All the best to you.