Hi from a "you might have MS" shell-shocked newbie
Posted: Thu Sep 08, 2011 10:32 am
I just found out yesterday that my neurosurgeon (who I'm seeing for disks that are pressing into my spinal cord) thinks that I may have MS, and my primary doctor has been suspecting that but didn't say anything about it to me. I have been obsessively researching since then -- I am someone who copes best with a potentially difficult situation by learning absolutely everything I can about it.
I'm also someone who copes worst when I have something going on that the doctors can't really explain, which has been the story of my life for the past year -- well, the doctors (three orthopedic surgeons, three physical therapist's evaluations, a chiropractor, a pain management specialist, my primary doctor, a neurosurgeon, and a partridge in a pear tree) have done plenty of "explaining" but few of those explanations really fit what was going on with me, and none of the "solutions" they tossed at me have done any good so far. Knowing that even after I see a neurologist and have yet another round of tests, the answer may still simply be "you might have MS, let's see if things progress to the point where we can confirm that" is about the worst thing I can hear -- far worse to me than getting a definitive "you have MS" (or whatever other answer they might give me).
I'm looking for guidance and support from two directions.
First, how to get through the time between "you might have MS" until you're finally diagnosed, one way or the other? From everything I read, I recognize that for some people, this could take years, and the idea of spending any significant amount of time not knowing just flattens me.
Also, how do you deal with -- or find medical/therapeutic professionals to deal appropriately with -- symptoms that are not responding to standard treatments (for me, SI joint problems, sciatica, and low back pain, or at least pain that mimics those things)? I don't want to go in guns blazing and insist on (for example) getting set up with a PT who will address these problems as if they're MS symptoms even though I don't have that diagnosis, but it's clear that the traditional treatment's I've gotten have been ineffective, and my quality of life right now is seriously diminished as a result of the pain and weakness I'm experiencing. Do you push yourself as far as you can, even if it temporarily increases the pain or weakness or whatever? Or does really pushing yourself end up being bad in the long run? I"m used to pushing myself, but I've been reluctant to do that for a while for fear of exacerbating the physical problems that were supposedly at the root of all that's been ailing me, and now I'm scared to push myself for fear of exacerbating what could be MS symptoms.
FYI, I'm a 52 year old college professor and computer geek. My spouse and I are raising our two granddaughters, 5 and 15. I still habitually say that we're also really into working on fixing up our old house, but I've not been able to do much at all in the past year. My symptoms started last year when I started exercising regularly and trying to run. I started having a weak left leg - it just felt heavy and hard to move, and would get unstable if I tried to put my full weight on it for any period of time. They did a lumbar MRI, saw nothing of consequence, and just tossed me into PT for "low back pain" which I didn't have but I tried to be a "Good Patient" and went along. That progressed to SI-area pain, then later to sciatica-type pain, together with the weakness and a progressive amount of tingling - almost like my leg was "asleep" but is coming out of it but still feels thick and tingly. Through this I did 3 solid months of PT (plus some chiropractic) with no improvement. Then in May I started feeling that same weakness/tingling in my arm, which led to a cervical MRI that showed two bulging disks pressing against my spinal cord, along with a small amount of myelomalacia (according to the radiologist) and what the neurosurgeon interprets as a small MS-like lesion. No problems were found in the nerve tests done on my arm and leg, and I got only minimal relief from an SI joint injection done to help with the pain centered there. In the mean time, I also now find myself having that same thick/tingly feeling in my left torso (even the left side of my crotch, as if I just took a really long bike ride) and even up to the left side of my face. What I realize now likely adds to the neurosurgeon's guess of MS is that my symptoms are always far worse at night, and I totally can't deal with being too hot (I'm freezing my poor family and creating sky-high air conditioning bills) which I'd attributed just to being fairly newly in menopause, but which I now see could be an MS symptom. I'm also recognizing that some unexplained health problems in the past could also be connected, in particular a couple of extended periods (couple of months each) when I was just physically tired beyond anything I'd ever experienced.
I'm praying almost non-stop that the doctor is wrong and that I actually don't have MS. But what is even more important is to get answers and not be in this blasted limbo for any longer than I have to.
I'm also someone who copes worst when I have something going on that the doctors can't really explain, which has been the story of my life for the past year -- well, the doctors (three orthopedic surgeons, three physical therapist's evaluations, a chiropractor, a pain management specialist, my primary doctor, a neurosurgeon, and a partridge in a pear tree) have done plenty of "explaining" but few of those explanations really fit what was going on with me, and none of the "solutions" they tossed at me have done any good so far. Knowing that even after I see a neurologist and have yet another round of tests, the answer may still simply be "you might have MS, let's see if things progress to the point where we can confirm that" is about the worst thing I can hear -- far worse to me than getting a definitive "you have MS" (or whatever other answer they might give me).
I'm looking for guidance and support from two directions.
First, how to get through the time between "you might have MS" until you're finally diagnosed, one way or the other? From everything I read, I recognize that for some people, this could take years, and the idea of spending any significant amount of time not knowing just flattens me.
Also, how do you deal with -- or find medical/therapeutic professionals to deal appropriately with -- symptoms that are not responding to standard treatments (for me, SI joint problems, sciatica, and low back pain, or at least pain that mimics those things)? I don't want to go in guns blazing and insist on (for example) getting set up with a PT who will address these problems as if they're MS symptoms even though I don't have that diagnosis, but it's clear that the traditional treatment's I've gotten have been ineffective, and my quality of life right now is seriously diminished as a result of the pain and weakness I'm experiencing. Do you push yourself as far as you can, even if it temporarily increases the pain or weakness or whatever? Or does really pushing yourself end up being bad in the long run? I"m used to pushing myself, but I've been reluctant to do that for a while for fear of exacerbating the physical problems that were supposedly at the root of all that's been ailing me, and now I'm scared to push myself for fear of exacerbating what could be MS symptoms.
FYI, I'm a 52 year old college professor and computer geek. My spouse and I are raising our two granddaughters, 5 and 15. I still habitually say that we're also really into working on fixing up our old house, but I've not been able to do much at all in the past year. My symptoms started last year when I started exercising regularly and trying to run. I started having a weak left leg - it just felt heavy and hard to move, and would get unstable if I tried to put my full weight on it for any period of time. They did a lumbar MRI, saw nothing of consequence, and just tossed me into PT for "low back pain" which I didn't have but I tried to be a "Good Patient" and went along. That progressed to SI-area pain, then later to sciatica-type pain, together with the weakness and a progressive amount of tingling - almost like my leg was "asleep" but is coming out of it but still feels thick and tingly. Through this I did 3 solid months of PT (plus some chiropractic) with no improvement. Then in May I started feeling that same weakness/tingling in my arm, which led to a cervical MRI that showed two bulging disks pressing against my spinal cord, along with a small amount of myelomalacia (according to the radiologist) and what the neurosurgeon interprets as a small MS-like lesion. No problems were found in the nerve tests done on my arm and leg, and I got only minimal relief from an SI joint injection done to help with the pain centered there. In the mean time, I also now find myself having that same thick/tingly feeling in my left torso (even the left side of my crotch, as if I just took a really long bike ride) and even up to the left side of my face. What I realize now likely adds to the neurosurgeon's guess of MS is that my symptoms are always far worse at night, and I totally can't deal with being too hot (I'm freezing my poor family and creating sky-high air conditioning bills) which I'd attributed just to being fairly newly in menopause, but which I now see could be an MS symptom. I'm also recognizing that some unexplained health problems in the past could also be connected, in particular a couple of extended periods (couple of months each) when I was just physically tired beyond anything I'd ever experienced.
I'm praying almost non-stop that the doctor is wrong and that I actually don't have MS. But what is even more important is to get answers and not be in this blasted limbo for any longer than I have to.