View Full Version : Myelomalacia vs Arachnoiditis

05-16-2015, 01:59 AM
Hello all,

I'm at my wits end. I've been dealing with all over body pain (burning and tingling in joints, aching joints, burning arms, burning legs, burning ribs, burning head and face, burning back, burning skin) and I've had mutliple MRI's, EMG's, and Nerve Conductions to no avail. They say my findings (5 herniated discs) are not consistent with my symptoms.

What seems funny to me is that whenever I sit for long periods of time or exert my back (such as in sex or exercising) the pain gets permanently worse and even affecting all other areas of my body.

Since the doctors cant find a condition to label me with, by God I'll do it myself. I'm mostly unable to sit or lay down (standing doesnt hurt me too badly) but I am wanting to drop out of college. I think I've got it narrowed down to 3 things: arachnoiditis, myelomalacia, or lyme disease. However, lyme might not make sense because it hurts much worse when sitting and that might not be consistent with lyme.

It is worth mentioning that among other things, my MRI mentioned this: "There is a focal central disc protrusion at T5-T6 causing mass effect on the cord anteriorly with a punctate focus of increased T2 signal in the cord, representing myelomalacia". This was a year ago. I asked for a new MRI this year after symptoms are getting progressively worse, and the MRI reads, "At T5-6 there is a central disc protrusion with effacement of anterior thecal space and deformity of the cord. There is no abnormal cord signal. The previously described altered signal is not seen to advantage." What the hell! Did the myelomalacia dissapear? Are they trying to cover it up??

Anyways, my life (if thats what you want to call it) sucks and is completely unlivable. I cant have sex, cant sit, cant work, cant exercise, nothing. At 27 this is so hard to deal with. Back to the topic, does this sound more like arachnoiditis or myelomalacia?

05-16-2015, 05:52 PM
The symptoms of myelomalacia would be very different and generally start in dermatomes below those served by the area.of damage. The other thing about myelomalacia is that it seems to be mis-read often. In my case I had a radiologist read myelimalacia and I had several radiologists say both that mri and subsequent ones did not show myelomalacia but rather likely motion artifact.

As far as arachnoiditis the symptoms match better but there is usually some initiating event. Severe infection, damage from spinal surgery and/or steroid injections, repeated trauma. Did you have some such event (s)? Also stories I've read of this speak of horrible, intractable pain but generally more localized. Often a ct myelogram will show issues in arachnoiditis.

Lyme's as you say shouldn't be positionally dependent. Have you had other indications of Lyme's like the rash, tick exposure, positive Lyme's panel?

My other thought was fibromyalgia although from what I've read the pain tends to be less "burning".

At any rate you do have a problem at t5/t6. Both mtis agree there is some compression there. That could be causing some of your symptoms, but could lead to more significant problems over time. I don't know what kind of Drs you've seen but that should be looked at by a spine specialist. That is a neuro or Ortho surgeon with specialized training in the spine that limits their practice to spinal issues only.

Good luck and let us know how you do...

05-16-2015, 06:04 PM
How would the symptoms of myelomalacia be different? I do agree with you that most people I've heard of with myelomalacia have it on their cervical, which is why they get symptoms all over their body. As far as arachnoiditis goes, I did have traumatic injuries. I've been in multiple, serious car accidents over the course of my life but with no pain. Just 2 years ago I had a weight lifting injury and after this I started to experience minor back pain. I had an epidural injection to no avail. It was only after sitting in one position on a plane for 10 hours that my arm started burning. A week later, I worked out and my entire back started burning from that point on. Now, after multiple attempts of sitting in one position for too long my entire body burns and tingles and I am mostly bed ridden (of course laying down hurts too).

What perplexes me is that nothing came up in the nerve conduction and EMG studies. The doctors say they dont know whats wrong. Thats why I'm reaching out for knowledge from you guys and to see other doctors around the US.

05-17-2015, 05:15 PM
Myelomalacia doesn't normally cause generalized, overt sensory symptoms although they are occasionally found. Often, there is no pain at all. Progressive motor deficits (weakness etc) and upper motor neuron signs such as hyperreflexia are hallmarks.

EMGs are very sensitive to certain types of muscle damage and nerve damage that causes denervation/re-enervation (dis/re connection of a muscle to its nerve supply). NCV detects disruption of nerve conduction as you see in some neuropathies like carpal tunnel. Myelomalacia and arachnoiditis for instance don't specifically damage nerves or muscles so ncv/emg would often be normal. Radiculopathy (symptomatic pinched nerve) on the other hand affects the nerves and therefore may show up on EMG.

I reccommend you go to a spine specialist for a proper evaluation. If it is arachnoiditis it's generally not easy to diagnose so you'll want an expert. They can evaluate the thoracic compression as well. Good luck!

05-17-2015, 06:35 PM

I've seen 3 neurosurgeons and 1 orthopaedic surgeon and they all agree that the problems they are finding with my back are not the cause of pain. After that, they pretty much ask me how much stress I'm under and say I need to see a psychologist. I'm FREAKING not crazy but these docs seem to think so. The medical system has failed me. I am done seeing these so called "specialists". That is why its up to me to be my own researcher and why I'm on here picking everyones brain. Thanks for your help. BTW, do you think it'd be beneficial for me to try and get an MRI with contrast? Maybe it'll pick something up that has not been picked up. Also, is it possible all the neurosurgeons I've seen have missed the arachnoiditis on the MRIs?