Mission Statement

This website documents one man's quest to cure his MS through determination, perseverance and a little luck.

Although harsh drugs and strict diet were successfully supressing my devestating MS relapses, disease progression was quickly deteriorating my ability to walk and slowly deteriorating my ability to think. The logical solution for me was to try HSCT, which is not FDA approved, so I left the country to do it. This website documents my research and journey to effect a cure.

Time Since Transplant



1136 Days

clock

(UPDATED 4/2017)

Ouch. I suffer from chronic neuropathic pain (NP) as a result of my MS.

In the case of NP caused by MS, the nerve fibers themselves have been injured and become damaged. These damaged nerve fibers send incorrect signals to the pain centers in the brain, the part of the brain which interprets nerve signals and determines if those signals should signal a sensation of pain. The impact of nerve fiber injury includes a change in nerve function both at the site of injury and areas around the injury.

In my case, I have a lesion in my cervical spine (neck) around C1/C2. A MS lesion is the result of the immune system attacking the nerves, then the body unsuccessfully attempting to heal the damage, leaving behind a mess of scar tissue. The lesion is laterally located on my left side. The result is: 1) lots of pain downstream of the C1/C2 nerve, into my left shoulder, arm, and sometimes hand; 2) weakness in my left shoulder, arm and hand; 3) weakness and loss of control in my left hip and down my left leg, into my foot; 4) burning pain in my right leg and foot.

There are three approaches I use to minimize pain:

Proper Diet

Consumption of a proper diet also includes eating on a regular schedule. I have found that if I skip or even delay a meal, this can significantly increase my pain levels.

Anticonvulsants

Anticonvulsants are basically anti-epileptic or anti-seizure medications. They suppress the rapid and excessive firing of neuron activity, basically tampering down over-active nerve signals, which is what damaged nerves can look like to the brain. Use of anticonvulsants to address NP is basically an off-label (not specifically what the manufacturer intended) use. Many medications like these are prescribed frequently for off-label uses.

One of the great things about anticonvulsants is that, unlike most medications in a particular category, if one particular agent does not work well for the patient (because of efficacy or side effects), another may offer different results. These medications represent a very diverse group of pharmacological agents, classified into sixteen subcategories, each consisting of 1-10 different medications.

Lyrica, gabapentin (aka Neurontin) and carbamazepine (aka Tegretol) are commonly known anticonvulsants which are used for pain. I take gabapentin (under the brand, Gralise) for more general body pain and burning pain, and I take carbamazepine for more direct, sharp pain.

Medical Marijuana

One of the ways I deal with breaking out of a pain crisis is to use medical marijuana with a high concentration of CBD. I use a tincture and tend to like between a 1:1 and 3:1 mixture (CBD:THC). I also have pure CBD oil which, in my opinion, seems to be more generally therapeutic; it doesn't seem to address a pain crisis as well without at least a bit of THC in the mix.

For more about my thought processes on this topic, see these blog posts:

Watch this video to see a similar reaction to what I experience. My uses it to combat extreme pain; Larry Smith uses it to combat Parkinson's tremor dyskinesia. It doesn't always work so dramatically, but often it does, especially for specific types of full-body pain caused by general nervous system overload. If you have MS pain, you know what I'm talking about.

Medical Marijuana and Parkinson's Part 3 of 3

Here's a very comprehensive article analyzing marijuana from a medical use point of view:

tDCS & pEMF - Update 4/2017

I recently became horribly frustrated with the side effects of all the medication I was taking. Furthermore, the pain control had slowly been waning for a couple months, so I decided to look elsewhere for pain relief. My pain neurologist mentioned TMS (transcranial magnetic stimulation). While researching TMS, I also discovered pEMF (pulsed Electromagnetic Field) and tDCS (transcrainal Direct Current Stimulation). All these therapies are known as neruostimulation.

I was able to find several studies online, including on the National Institute of Health's website. There is clear evidence that these new therapies can significantly reduce pain without medication. I began treatment three weeks ago, and after a few days, I began feeling better. As of now, I have already been able to reduct my anticonvulsants significantly while reducing my average pain by a good two-thrids!

This therapy is not covered by my insurance, which I think is criminal. And it's expensive. Yet I'm so convinced it's helping me, that I purchased my own professional-quality unit, so I can do my own treatments at home. I'm still under the supervision of my neurostimulation doctor, Dr. Tiff Thompson of Theramind. (They have several locations in the USA).

I intend to continue treatment until I can completely eliminate my need for anticonvulsants. Furthermore, there's evidence to suggest that neurostimulation can encourage both neuroplasticity and neuroregeneration, so I plan one experimenting and continuing treatments for some time.