Umm Anonymous on Living with Multiple Sclerosis, Part 1

Umm Anonymous is a Muslim mother of two. In early 2012, after a mysterious and rapid decline of her physical abilities, she was diagnosed with Multiple Sclerosis (MS), a chronic autoimmune disease. Alhamdulilah, she is now being treated for MS and is in remission. Portions of this interview have been altered to preserve the sister’s privacy.

What happened the day you were admitted to the hospital? Where did all of this start?

The actual symptoms started way before I was admitted to the hospital. 

In hindsight, I had an episode of MS which went undiagnosed. There was a three to five week period where I lost the ability to read with my right eye and I had a 15-day migraine. It wasn't a migraine just when I woke up or just when I was tired or just when I was hungry; it was all day, every day, with no abatement for 15 days. I had jaw pain, I had ear pain; the entire right side of my head was in pain: head, neck, and shoulder with the loss of my ability to read. I could see who I was talking to, I could see different objects in the room, I could drive, but if I put a page within my line of vision I couldn't see the words with my right eye. It would just be a white sheet.

I went to eight doctors to see what the problem was. Literally, eight doctors and not a single one of them said that it might be MS.

I had an MRI which came back inconclusive. There was some spot of abnormality but it was too small for them to draw any conclusions. I was told to come back in three months to have a contrast MRI done but by then I felt fine so I didn't go back. I was given some medication for the migraines which didn't work because the medication wasn't to treat migraines related to MS. But at that time I didn't know that I had MS and my doctors didn't either.

When I started to get sick again I was preparing for a 65 mile bike race. My workouts would be about 2.5 hours long, four to six days per week, and I could go to 2.5 hours without feeling tired. At the beginning of the month, I started to feel fatigued at about two hours, and then later that month 90 minutes became difficult for me. And then an hour and 15 minutes was getting difficult. I thought maybe it was because I wasn't eating right, I thought maybe I had put on some weight. I tried making modifications but it didn't make a difference. My stamina was still declining and I couldn't figure out why.

One day I had a very intense run and it felt great. But later that day I started feeling a tingling at the edge of my left foot and thought maybe I was pounding my feet too hard during the run. It didn't make sense to me but I figured it would go away in a day or two.

Prior to that, I noticed that if I put pressure on my right thigh I would feel a really warm sensation. It wasn't burning, but it felt like someone took a heating pad and just covered that part of my body. I didn't think anything of it and it was really subtle; I almost barely noticed it. Then the thing happened with my foot. Within a few days after that, the sensation covered my entire body with the exception of my head, neck, and left arm and shoulder. It was this pins and needles feeling throughout my entire body. Sitting was irritating, standing was irritating, walking was irritating. If my clothes rubbed against my skin it felt like someone was scratching me with hot, broken glass. My skin just hurt.

Knowing what I know now about MS, this is all within the range of what’s normal. And the range of what’s normal for someone with MS is really, really broad because it’s a neurological disease. Depending on what part of your body is being attacked by your immune system, that’s going to bring about certain symptoms that you might have but I might not have even though we both have the same disease. 

I went to the emergency room the next day because my primary care doctor had a death in his family so he wasn't working. The emergency room doctor was unhelpful and kind of took my symptoms as a joke. He gave me an antibiotic and a prescription strength motrin. He also encouraged me to go see the neurologist because he was poking me and asking if it hurt and I was practically jumping off the table. He couldn't believe that his poking me was causing so much pain. He figured I might have a really bad case of the flu. But he gave me an antibiotic and the flu is a virus and viruses don’t respond to antibiotics because viruses are not biotic but, whatever.

So I went home feeling frustrated, feeling disrespected, feeling like I had wasted my day because I know that whatever he thought it was, he was way off. He diagnosed me with something called Neuralgia. It’s just a fancy name for my symptoms. It’s not a diagnosis; it’s more of a description. It’s just an adjective.

I saw the neurologist and she gave me a very thorough physical exam. She had me squeeze her fingers, walk on my toes and walk on my heels, hop on one foot and walk in a straight line. She was also poking at me and she checked my reflexes. All of my reflexes were fine. So that physical went well. She couldn't figure out why I was feeling so weird. She put me on a medication called Elavil which is an antidepressant, but she was prescribing it for an off-label use because they found that it also works for neurological symptoms.

I went home and started taking the Elavil because I was in so much pain. At this point all of my skin hurt, except for the parts that I mentioned, and now my feet were painfully cold. The pain I felt in my feet was like I decided to go shovel the snow after a blizzard barefoot and with no pants. It was painfully cold. I was wearing these thick fur-lined boots everywhere with ski socks. And my feet still felt cold. In addition to this, if anybody touched me or brushed against me my skin would feel like I was being scalded with an iron. But internally I felt cold all the time. I had to wear layers upon layers of clothes.

It was a Friday afternoon and I checked my insurance provider directory and I just started calling any doctor that would take my insurance. "Can you take me today? No. Okay." "Can you take me today? No. okay." I wanted to see someone that night because I wasn't sure if I would get any treatment over the weekend and I didn't want to go back to the hospital and run into that other doctor.

Now, were you were calling another neurologist or just any doctor?

I was calling ANY doctor because I was desperate and I was in so much pain. In addition, I was feeling weak. By this point it had been a week since I stopped exercising because I just couldn't do it anymore. 

I was still working, but it was very difficult for me to get around the building. Going up just one flight of stairs was like I was carrying a load of rocks. And I’m a physically fit woman. I could hop up the stairs on one leg and not be breathing heavy by the time I get to the top floor. But just in the course of two weeks my body kept getting weaker and weaker and weaker. And that was what really concerned me because it’s not like I live a life that’s sedentary. It’s not like I’m majorly overweight. I’m a pretty healthy person, a very physically fit person, and to see my fitness level drop so quickly and so dramatically in such a short period of time was really scary for me.

So I went to another doctor and I started telling him my symptoms. I was prepared for this appointment. I knew the names of my drugs; I knew what they were to be used for. I kept a journal of all the things that I was feeling so we could try to piece together what the problem was. I wrote down everything. When I went in, he didn't seem totally interested in listening to these things and I told him, "No. You need to listen to this. I don’t know what’s wrong but I know that I’m very sick."

Another issue that I was having trouble with at this point was urinary incontinence. I didn't know whether it was related to the other symptoms I was feeling but in that time I stopped drinking tea. I also drastically reduced the amount of water I was drinking. I would avoid liquids all together. Fortunately I worked close to home, so if I had a free period I would run home to change my clothes and take a shower because I would have najasa on me and wouldn't be able to pray.

I told the doctor about this and he thought I had something called Rhabdomyolysis which is kidney failure due to excessive physical exertion. High performance athletes are more likely than other people to get it. But one of the hallmark signs is that your urine is going to be a very brown color. But my urine wasn't brown. And I hadn't exercised in more than a week at that point so that definitely wasn't it. But he evaluated me for that and took my blood work and urine and my results were fine.

I went back to my neurologist a second time who had me go through the physical exam again. It was the same exact physical as before. Walk on your toes, walk on your heels, walk on one foot, squeeze my fingers, lift your toes from the ankle, and this time I couldn't do any of the things she was asking me to do. 

The first time I saw her, she essentially told me that it was all in my head. “Maybe you’re too stressed, maybe you need to sleep more, maybe you should take a break.” The second time I saw her, which was only in the span of nine or 10 days in between, I could hear the fear, doubt and confusion in her voice and I saw these emotions on her face. In fact, when I walked in from the waiting room to the examination room I was walking with a very heavy limp. My ability to walk at this point was rapidly declining. I would lead with my right leg because it was my stronger leg and I would just drag my left leg behind me. So when she saw me walking she said, “What happened to you?!” Not ‘hello’ or ‘how are you feeling?’ But, “What happened to you?!” And I said, “I don’t know doctor; I’m sick.”

Then she wrote a prescription for an MRI of my entire spine, thoracic, cervical and lumbar spine. She also wrote a prescription for me to get an ultrasound on the veins in my legs because she couldn't explain why my legs and feet felt so cold to the touch. She thought maybe I was having some sort of vascular problem. The ultrasound was normal. Because she looked so confused and just in over her head, I decided to see a different doctor.

My family had been after me at this point to see a doctor of sports medicine. We had the interview of my symptoms. By this point I was making a mess on myself in the bathroom. To walk, I actually had to pick up my leg to move it to where I needed it to be. Getting in and out of the car I’d have to do the same. He did an x-ray of my spinal column and 15 minutes later said that bones were fine. Then he started the physical exam. I couldn't lift my leg. I couldn't point or flex my toes. I couldn't resist him when he pushed down on my leg. He just folded his arms and said, “You really can’t do it?” And I said, “No, I can’t.” Then he asked me did I have a car accident? Did I fall down a flight of stairs? Was I hit with or by anything or anyone? And I said, “No.” I didn't have any physical trauma, it just happened. And I shared all of the information I had for the past month of symptoms and he listened to all of it.

He told me to go the imaging center that day to get an MRI but I couldn't get the appointment because I didn't have approval from my insurance. He called the supervisor of the imaging center himself on her cell phone and begged and begged and threatened on my behalf. This was the first time I had ever seen this doctor, so for him to stick his neck out in this way was amazing. The final answer from the imaging facility was no.

He wrote me a prescription for the emergency room and said “they have to take you.” He wrote on the prescription to check for Cauda Equina Syndrome. Cauda Equina means 'horse's tail'. At the end of the spinal cord there is this tail that hangs, and in the case of an accident you could get one of the pieces of the tail caught in between your bones which is a medical emergency that they’ll want to treat within 24-48 hours. I had already been like this for a month. But he knew that writing that on the prescription was absolutely necessary to get me the MRI. And he wrote his cell phone number on the prescription and said the radiologist had to look at the MRI that same day and call him back no matter what time it was. 

So I went to the hospital. I thought that I would be out within a couple of hours. They gave me the MRI for my spine and after giving me their own physical they added an MRI of my brain. They brought me back to the emergency room and I’m just sitting there waiting. After some time, I called the nurse and said “I’m going to get a ticket so, what’s up? Can I talk to the doctor? Should I go put money in the meter?” She said, “No. We’re keeping you.” And I said, “What? Why?” And she said, “I’ll have the doctor speak with you.”

The doctor came in, said she looked at the MRI, and then said, “You have Multiple Sclerosis.”