I want to start by saying that I know I am very blessed to be dealing with the relatively minor issues that I do. I've done a little research, trying to learn a little about MS so I wouldn't have to ask silly questions, but it seems the more I read the less I felt like I really knew about the topic.
I am a 55 year old male and was diagnosed with primary progressive MS about 3 years ago. Symptoms like leg and torso numbness, burning pain in leg and torso, spasticity, fatigue, and pain associated with unrelated back issues as well as some cognitive and bladder issues have been gradually getting worse.
The burning in my leg is pretty much constant now and too intense to tolerate at times, and the other symptoms have worsened also making walking much more difficult and range very limited. And sleeping...
My understanding is that my treatment options are limited to treating each symptom, and it seems to me at least that to this point that has had limited success. So anyway, the question I guess is really one of expectations. I just need to know...are the gradually worsening symptoms what I should be expecting and something I just need to deal with somehow? Is there any point to whining to my neurologist again?
I'm sorry to hear about your struggles with the progressive nature of your MS. It is telling that you refer to your problems as "relatively minor issues." I applaud you on your ability to take perspective and notice where things are good in respect to your MS and functional status. Some individuals (regardless of whether they have MS) always focus on the negatives, which in my experience as a physician working with patients dealing with a chronic illness, is very disabling by that fact alone.
You are correct in that the current state of MS therapeutics is extremely limited for reparative strategies due to the underlying damage to the nervous system caused by MS. There are some interesting experimental therapeutics currently being investigated in phase I and II clinical trials right now (anti-lingo and rhIgM22 antibodies), and we patiently wait on what we learn about these biologics. You are also correct that the progressive phase of MS is primarily dealt with in terms of treating symptoms. Based on the nature of the symptoms, strategies involving symptomatic pharmaceuticals, cognitive rehabilitation, and physical medicine and rehabilitation measures can be used (among others). I would counsel you to always bring up your symptoms and concerns with your neurologist. While it is important to recognize the limitations to medicine and the state of treatment for MS as it currently stands (which it appears you do), it is important to keep in mind that there are symptomatic therapeutic approaches that could be very beneficial to you. As a MS neurologist, I must admit that I can't read my patient's mind, and I find it very difficult to know how to help unless they speak up. We genuinely want to help, and you shouldn't feel that you are whining (your word). Please see this communication from a patient perspective on this topic: http://www.healthcarejourney.com/patient-blog/communication.
Many times, the physiatrist (a doctor who focuses of rehabilitation medicine) will play a lead role in the progressive symptomatic treatment of patients with MS in concert with the neurologist. Most comprehensive MS centers have these physician subspecialists that can be integral in your treatment team.
Hope this helps,
A. Scott Nielsen, MD MMSc
Virgina Mason Multiple Sclerosis Clinic