awritersmind

I have a chiropractor who’s worked with us for years who is going to try and get me set up for one since no one else will take responsibility for my case.

I believe I’ve read all the info on myelopathy. However, I don’t see any mention of shortness of breath and rapid heart rate? (I might have missed it.) It’s happening more and more this past week that when I am up and around I get winded, feel light headed, and my heart rate jumps up. I have an oxygen meter from keeping tabs on my sleep apnea, and it was at 97% and my heart rate was 130 when I finally went and checked today. It’s been sporadic, but all day today I’ve been stuck sitting around because it won’t let up. In the past 10 years I’ve had trouble with low blood pressure and it will also drop 25 points at times, so I’m hoping it’s just that… It’s getting harder to move my neck, and more and more I’m getting that zapping.

Thank you for your response!

I thought of a few more questions. I’m not sure if these are a cause for concern or not. I’ve had so much trouble with doctors trying to psychoanalyze my symptoms over the years that I’m hesitant to talk about them.

Is it a cause for concern that when I rotate my neck, especially when tilting my head back to look up or find a pressure relief position, my neck cracks and is very painful, sometimes making me feel stuck, and it feels as if one or two vertebrae shift? I’m not sure where the spinal regions start and end, but it is around probably one vertebrae down from the one in line with the shoulders. The cracking sounds like it’s from higher up, but I know with cracking it can be hard to tell, but it’s quite painful. Also, sometimes when this happens, and other times when I turn, or just shift some, I get a twitch, and I can feel where it originates, ( similar area that gets the shifting sensation) and from there up my body gives a decent convulsion that is very brief that effects from that level up through my neck. It’s like a zap going through my back. Also, I keep getting the sensation as if hot water is being poured down my spine from the neck region down.

The heaviness in my legs is slowly getting worse too. I feel the constant need to stretch my legs, and the stiffness sets in very quickly. Again, since I’m having trouble finding a doctor, and I only get about 2-5 minutes with a doctor, I want to make sure I mention the most crucial details when I finally get it.

Thank you again for your dedication!!

A few more details:

Have had neurosurgeons, ortho spine surgeons, and neurologist look at films. They say it’s nothing and I’m not getting anywhere… But I’m not confident that any of them really looked at them long, because each time I mention did they look at the CT scan, all I get is, what CT scan?

However, the other night, the left foot was floppy (low muscle tone?) and the big toe drooped down and underneath the other toes, and the right foot instead, had the toes pointing up in the air as if a great deal of muscle pulling on the foot because I wasn’t controlling it. Sporadic things like that happen.

I also have a small incidental syrinx that runs from T4 to the distal cord.

My main concern is the trouble walking and abnormal gait. My legs are slow to move forward, and it seems some of it may stem from the hip area. I also have trouble with the calves spasming and feeling weak, which throws me off. My balance isn’t too great, but I have managed to avoid falls when I’ve stumbled or tripped. However, even with my AFOs and leaning on them to support my knees, my lower legs move forward slowly. It’s not quite a scissoring gait, but my hips do swing out some because I have the sensation that I’m bowlegged. Pain does occasionally shoot down my legs from my buttocks into my calves and around my knees. I feel it into my ankle, and the lower leg with throb constantly with a deep ache. Sometimes it goes into my outer toes, sometimes my big toes. I also get what I think are neuropathy pains in my outer toes and bottom of the feet.

Supposedly the nerve conduction and EMG was normal, although some were not as good as it was been previously after surgery. I’m not sure why that didn’t puzzle the doctor. I know arm and hand pain is typically associate with cervical issues, and the MRI of cervical spine at age 18 showed early degenerative disc disease at C3/4 and C4/5 I believe. No MRI since.

So pain isn’t my main issue. I’m terrified about the functional loss and that no one knows what to do or will even take me serious. I’ve been through this before and I never want to end up facing the “you’ll never walk again” conversation…