Month: February 2011

My continued MS path – CCSVI

Without going into the full details of what Chronic Cerebro Spinal Venous Insufficiency (CCSVI) is, I’ll just start by saying that on February 11, 2011, I visited Dr. Sperling’s office in NYC to start down the path towards the “Liberation Therapy”. It really is nothing more than an angioplasty, which has been performed on people for 40 years, but it is now being used on MS patients with much success. Within two months, I hope to report my results after the procedure. Stay tuned!!

Feb. 17, 2011: Just received my script for required blood work to ensure kidneys are ok. Insurance approved the MVA procedure, which is the test to see if there is vein constriction in the neck and chest. Blood work will be done on Monday. The actual test will be scheduled within 1-2 weeks. Getting excited!

Path to diagnosis – Part 2

Eventually my walking degraded. I was having problems going up and down stairs. My limp was getting worse. I couldn’t even walk up or down hills or slight inclines. I couldn’t wear heels anymore, not even low heels, because my left ankle would turn. In addition to the leg problem, I started having problems seeing. I usually wear distance glasses while working on the computer, but all of a sudden, I couldn’t focus on the screen. I had bought over the counter reading glasses, and I could only focus on the screen if I wore the reading and distance glasses at the same time! Imagine what I looked like. I just KNEW I was falling apart.

My biggest scare, the one where I knew something was seriously wrong, was when I was on a trip to Jamaica with my family. (It’s kind of embarrassing, so close your eyes or hold your ears if you can’t stomach it). I was in the ladies room, crouching over a toilet, and eventually my legs gave out and I literally fell into the toilet. It wasn’t so much that they gave out; it was that I didn’t have the ability to stop myself from falling. No matter how hard I tried to pull myself up, my body wasn’t responding. I had to yell for my daughter to help me up. As I said, embarrassing. I remember crying afterwards because for the first time I was really scared.

By the end of 2005, my walking was so bad that I was starting to wear out the tips of all of my left shoes. I didn’t know what I should tell my doctor. My knees hurt, I’m limping, nothing’s helping…what should I say is wrong with me? I decided to test myself to see if I could find a description for what could be wrong. “Lift the right leg: ok. Lift the left leg…lift the left leg…nothing. Lift the right leg: ok. Lift the left leg: nothing”. Ok, now I had something to tell my doctor. I can’t lift my left leg. I couldn’t get it off the floor, at all.

When I saw my doctor again, being the good doctor that he is, he again sent me to a neurologist. Again, right move on his part, wrong move on my part for picking any old neurologist out of the directory. I should have known there would be a problem when I had to wait a month for an appointment, and they canceled it the day before the appointment. Then I had to wait 3 more weeks for a reschedule. After describing my symptoms to this neurologist, who consulted with his partner, they thought the problem could be somewhere in my spine. They sent me for two MRIs, one on the lumbar region, one on the thoracic region of the spine. Both came back negative. When I called and asked for a follow-up, the appointment was for another month! I asked the person on the phone what I should do in the meantime since I can’t walk and she said, “Take aspirin.” This sounds like a cliché, but I KID YOU NOT!

I gave them the benefit of the doubt and waited for the appointment date, and they canceled it the day before. Yes, the day before. I was completely frustrated at this point, so I was pretty sour on neurologists and begin to self-medicate, thinking that the problem was still in my knees. I began wrapping my knees, using ointments, etc. Of course, nothing helped. Finally I gave in and went back to my regular doctor, who basically said, “Get yourself to a neurologist even if you have to pay for it out of your own pocket!” Ok, I’m going.

I finally decided that rather than searching for a specific neurologist, I would look for a neurology group, that way I could get the earliest appointment with the first available doctor. I got an appointment the next week. The new neurologist did a much more thorough exam, and said it was probably not my knees. He prescribed a brain and cervical spine MRI with/without contrast, and the rest is history. Within a week I finally had a name for what had been plaguing me for years.

I only wish, and in the future hope, that all neurologists recognize the symptoms of MS so they’re not waiting until someone crawls in on all fours before they decide to do the tests needed to make a diagnosis.

Path to diagnosis – Part 1

The first noticeable signs came within a few weeks after having major surgery in 1995. It started with dropping things. Very annoying…I’d pick up and drop an item two, three, four times. I couldn’t figure out why. I started becoming very “clumsy”, as I described it. I wasn’t falling, just losing my balance a lot. Then memory issues started. If I put an item down somewhere, I couldn’t remember where I put it, nor could I remember where I had been before I put the item down, so I couldn’t even retrace my steps to figure out where it might be. Then I started experiencing numbness in my feet, especially my right foot. I remember mentioning to my father that I always have to wear socks to bed because my feet were always cold, and he said he did also, so I attributed it to a family thing.

At one point the numbness in my feet became severe enough that I mentioned it to my doctor. Being the good doctor that he is, he thought it could be diabetes or a circulation problem. For the latter, he sent me for a Doppler test to see if I had a vein blockage in my legs – nothing there. To test for diabetes, I had that horrible glucose test, where you start by fasting, and then they take your blood. Then you eat a crappy breakfast, and then they take your blood. You finish by drinking a nasty orange soda-like substance, and then they take your blood. Result: no diabetes. He finally chalked it up to possible nerve damage in my feet, and sent me to a podiatrist. She did several TENS treatments that did absolutely nothing. I stopped going.

For awhile everything seemed to be fine. I still had the numbness in my feet, and I lived with it. Then in 2002, I started experiencing “a squeezing sensation around my rib cage.” That’s how I described it to my doctor. “It feels like someone has me in a vice.” Many of you probably know exactly what I’m describing. My doctor, not being a neurologist, said I should see a neurologist. Right move on his part; my wrong move was to pick any old neurologist from my health plan’s doctor directory. After describing my symptom, he said, “Well, you’re what, 43? You’re just getting old.” Comforting words, right? He suggested I get an MRI. I recently found the paperwork I received from this neurologist, but looking at the script today, I’m pretty sure the type of MRI he was sending me for would not have found the lesions. My biggest question is why didn’t he recognize my symptom as the MS hug? If he had, and if he would have sent me for the right type of MRI, who knows? I may have been able to start treatment early and would be walking normally today.

Anyway, I never went for the MRI. I was in school; my three children were still home and they needed my help; I was working full-time. Who had time to schedule an MRI? Eventually, the symptom went away. Well, THAT symptom went away. Others were starting, but I never went to a doctor for them. There was the “room swirling” that usually occurred when lying in bed, a feeling as if the room was swirling around me; of course, it was all in my head. There was the “stomach tightening” where again, usually while lying in bed, the muscles in my stomach would seize up so tightly that it would shorten my breath. There was the “are you done yet?” feeling, where, after urinating, I would still feel like I had to go; sometimes I couldn’t tell if I had actually finished. I started thinking if I went to my doctor with all of these symptoms, he would think I was a hypochondriac, so I kept my mouth shut.

As I said, I was in school during this time, working on a doctoral dissertation in computing. Not an easy task, but apparently the MS was making it harder for me. Sometimes an excellent idea would come to mind, but before I could write it down or examine it to see if it made sense, it would disappear. It was as if it had entered a black hole in my brain. Not only couldn’t I remember what the idea was, I couldn’t even remember the context of the idea, no memory whatsoever of what the idea was about. It was completely gone. I started thinking I was experiencing early onset Alzheimer’s, which wouldn’t have been unreasonable since my grandmother had Alzheimer’s. At some point I remember being so frustrated that I almost gave up on the dissertation.

While going through these issues, I was also having issues with my job. I eventually found a new job in August 2004, and was hoping maybe a new job would be less stressful and I could get back to work on the paper. The first week of my new job is when I experienced my first physical symptom. I’d always been a fast walker. Normally you don’t think about walking; you just put one leg in front of the other, and it’s automatic. Somewhere in the middle of a stride that I wasn’t really thinking about, my left leg skipped a beat. It paused for a split second, as if it was trying to figure out what it was supposed to do. This alarmed me, enough that I mentioned it to my husband when I got home. He didn’t seem overly concerned, so neither was I. But after this happened, things began to go downhill.

I didn’t feel the same sensation as before, but other things started happening. I fell running up the subway stairs…twice. Full out, flat on face, embarrassing falls. So I stopped running up the stairs. But then my knees started to hurt, especially my right knee. I was still walking almost normally, until I got hot. Then my left leg would start dragging, to the point where my shoe would fall off. I thought, maybe my shoes were too big, so I bought smaller shoes, but that didn’t help. I started slowing down when I got hot. I would be walking with co-workers and found I couldn’t keep up with them. Eventually I started limping. Nearly unnoticeable at first, but it began to become more pronounced over time. And the pain in my knees was becoming worse. In mid-2005, I went back to my doctor and told him about the knee pain. I had knee x-rays and MRIs, all which showed only minimal bursitis. I went to an orthopedist who called it patella-femoral syndrome. Ok, sounded plausible. I went to physical therapy, which seemed to help for awhile, but only for a short while.