MS Pain or another type of pain?

Hi Dr. Nicolson,

I had my first episode from RRMS in Mid-May of this year... which was numbness/tingling sensations in the left side of my face, arm, & shoulder. Within 2 months this was gone. I had 2 brain MRIs and a spinal tap which confirmed RRMS (I started Copaxone on October 15th). Since Mid-August, I have been experiencing pain and weakness in my left tailbone/hip/butt/thigh/it band/calf/foot. I have seen the following doctors about this (in order): my PCP, my Neurologist, a regular Orthopedic, 2 ER doctors, a spinal surgeon, an Acupuncturist, and a Physiatrist. I've had 4 x-rays, one MRI (of lumbar spine), and just yesterday an MRI (of pelvic region). I've fell down steps due to the weakness. They have tried a cortisone injection, a dose pak, Ultram, ibuprofen, Darvocet, Percocet, Flexeril, Baclofen, Soma, and pain shot injection (at ER). I've also had physical therapy for 2 weeks, and of course ice, stretching, etc. Finally, I think we have found the right combination of medication: 300 mg of Neurontin (3 x a day), and 5mg/500mg of Lortab (Every 4-6 hours as needed). My Acupuncturist believes it is my SI joint, and my PCP believes it is nerve pain from MS. Every other doctor has been totally clueless (besides the general term 'sciatica'). I will receive the results of my Pelvis/SI MRI on Thursday or Friday. My PCP thinks it will come back normal. I am no longer able to work, and had to file disability due to this pain. The pain get worse in the evenings/early mornings. At it's absolute worst, I am screaming and unable to walk. With more activity, the pain is worse. I now have a cane for times when I cannot walk, however I really think the Neurontin, Lortab, not working, and Acupuncture are helping to make a big difference in my pain levels. I was wondering what your professional opinion is? (nerve pain, MS pain, SI Joint pain, anything else??)

Thank you so much for your time and compassion,
Jenny

[Garth L Nicolson, PhD]

Since this appears to be relatively localized pain, I am certainly not a qualified person to ask about your condition.  You appear to be seeking the correct types of physicians who can help you.

[patchoulired]

Dr. Nicolson,

I received my MRI results today. They think it is "early avascular necrosis" based on the MRI.

[Garth L Nicolson, PhD]

Avascular Necrosis is cell death cause by an interruption of the blood supply to a tissue.  I am not sure which tissue was examined in the MRI, but blockage of or damage to blood vessels are the usual causes of loss of blood supply to a tissue.  

For example, a minor stroke can cause blood vessel blockage when a blood clot lodges in the brain microvascular. In MS, blood vessel blockage occurs in the brain, and sometimes mechanically breaking the blockage can cause decreases in MS symptoms.  

I believe that chronic intracellular infections play a role in MS, because the types of infections found in a majority of MS patients cause vasculitis or inflammation of blood vessels.  The inflammation is caused by release of inflammatory cytokines by endothelial cells.  In the brain this can result in avascular necrosis when the blood supply is not sufficient.  This hypothesis is not, however, generally accepted by the neurological community.

[patchoulired]

Thank you for the information!!! This particular MRI found the avascular necrosis in my left hip bone...

I'm not too happy about this. The first orthopedic doctor I saw about it assumed it was hip bursitis (without x-rays first), and gave me a big fat cortisone injection in my hip. Then, 2 weeks later, he put me on steroids. I read that this disease (AVN) can be aggravated by steroids. Needless to say, I will be going to a different orthopedic doctor!

So, do you think it is possible that the MS actually does play a role in the AVN of my hip? Very interesting.

Thank you again.

[Garth L Nicolson, PhD]

The example I gave was for brain and what could happen if AVN occurred in the brain.  You didn't specify what tissue or organ was examined, so I just assumed it was brain as an example.

If you don't have any systemic signs and symptoms, then this could be a localized problem caused by injury or another factor, such as a blood clot forming the lower extremities.

[Firemomto1]

A related discussion, MS and tailbone pain was started.