advice, asking for help, expectations, ms, MS Specialist, multiple sclerosis, treatment, UTI symptoms
I still worry about being a hypochondriac in spite of having been diagnosed with three chronic conditions that are based on imaging and/or biopsies (ie ones that I could not have possibly made up if I tried). I’m not sure why this fear hangs with me, but it does and I just can’t seem to shake it.
Remember my recent post about my right leg? Those brand new symptoms started way back at the end of July and I’ve been dealing with them ever since. After placing several phone calls to my MS Specialist (who suggested I call the local neurologist) and the local neurologist (who was out of town at the time and suggested that he wanted to know what the MS Specialist wanted to do), I was feeling more then a bit frustrated. The MS Specialist ended up ordering a Urinalysis (UA) with culture after I explained that I couldn’t get a local appointment to see if I had a UTI (which I’ve had…for ages already, but they said not to worry about it before). After I had my urinalysis done, it took the office over a week to call me back with the result and start me on antibiotics. As soon as I finished the round, I went back for another UA & Culture and got a call back three days later asking if I still had UTI symptoms. I never had UTI symptoms and I reminded her of that fact via phone. She said that was great, and apparently that was the end of it.
While all this was happening, the numbness in my right big toe was very slowly moving up and I was having to focus a lot on my gait. My toes started randomly cramping. In spite of stretching at least before bed if not several times a day, I was waking with seizing muscles. Then my left leg joined the party. I starting having burning pain up to my hip during the day and muscles spasms while I was at work – both are not typical for me. I do experience those symptoms, but usually only in the evening and at night. One particular muscle cramp in my left leg wouldn’t release regardless of what I did (I tried stretching, heat, massage, etc). It was making it very, very painful to stand or to walk – the cramp/knot was along the outside of my left calf, but the pain was/is going all the way into my thigh. And my fatigue returned. It didn’t feel quite as intense as my first experience, but it was bad enough that I had several days where I wasn’t sure it was safe for me to drive. I continued going to work, but worked even shorter days then normal to try to offset how I felt. I understand that I was not loosing my eye sight and that I was still mobile – there are plenty of people in worse situations. Since the neurologists didn’t seem concerned, I figured I needed to suck it up and keep going.
After a particularly bad day, I went to see my PCP. She ordered physical therapy hoping they might help with the muscle spasms and gave me Zanaflex to replace the Klonopin I had been taking at night as she thought it would do a much better job of preventing night time spasms. She gave me a shot of Rocephin in hopes that it would clear up the last of the UTI and also ordered some general lab work to make sure nothing else was awry.
I left feeling a bit better, but still not good. At one of the MS events I went to, I heard an MS Specialist speak who was planning to move to my area. On a whim, I called their office to ask about an appointment and they said they could see me the very next morning as a new patient (!!). Anyone who is familiar with MS Specialists will understand how rare that is. I took the appointment, deciding that a second opinion never hurt anyone. I was honest with his office when I made the appointment and with him when I went in that I wanted a second opinion about my MS overall and to get his thoughts on my current symptoms.
All told, the appointment was good. We went over my MRIs together in detail and he showed me each lesion including two on the brain and my long spinal cord lesion. He did find a new lesion on my January thoracic MRI that the original MS Specialist I saw didn’t feel like were present (she specifically said that I had no new lesions which was contrary to what the radiologist wrote in his report). He felt comfortable with the treatment plan I was on, but shared a few things I didn’t expect and that were shocking and a bit hard to take. I had previously been told by both a neurologist and an MS Specialist that I had a particularly aggressive initial presentation of the disease and that it needed to be treated very aggressively in response. Although he recommends the Rituxan highly and wouldn’t change that decision for me at all, he didn’t feel that it was strictly necessary. His experience has been that patients with a small number of brain lesions at diagnosis do relatively well long term. He said Rituxan is one of the best meds out there, so if my insurance would agree to pay for it, it would be his choice as well. Additionally, he said there was no reason for me to accept all my current symptoms as realistic expectations of my life as I had been previously told. Instead, he suggested several different medications I could try that would treat symptoms. All this was shared without any type of prompting from me.
Although the difference in opinion above is something I’m going to have to spend some time processing, most interesting for the current moment was that he said I was clearly experiencing a relapse even after looking at my UA & Culture result. He said that the infection may have triggered the relapse, but it definitely was one. He used the definition of relapse that I had heard/read before:
“An exacerbation of MS (also known as a relapse, attack or flare-up) causes new symptoms or the worsening of old symptoms. It can be very mild, or severe enough to interfere with a person’s ability to function at home and at work. No two exacerbations are alike, and symptoms vary from person to person and from one exacerbation to another. To be a true exacerbation, the attack must last at least 24 hours and be separated from the previous attack by at least 30 days. Most exacerbations last from a few days to several weeks or even months.” – National MS Society
Further, he said that it means there is inflammation on the central nervous system and, yes, a new lesion. He cautioned that the lesion may not be visible on imaging and I got the impression he didn’t believe imaging to be the be all and end all of MS. He said the spinal cord is packed too densely and lesions can be small that although there may be a lesion, we may not be able to visualize it. He shared that there are a subset of neurologists who choose not to treat relapses including the MS Specialist I currently see, but that is not his approach.
All that said, he felt it was mild enough that IV steroids weren’t necessary. So, I’ve started high dose oral prednisone (fun!) as well as a few new medications. After I am through the steroid and I start all the meds he prescribed, it will bring my med count up to eight medications per day + vitamins. And that doesn’t include my infusion and the infusion related meds. I’ve started the steroid and am waiting patiently for some relief, but I was warned that relief may not be immediate considering how long this has been going on. I’ve finally been able to sleep over three hours at night thanks to the Zanaflex and another med the new doc gave me. He wants me to try a higher dose of Baclofen then I was previously taking (it didn’t work for me last time) in place of the Zanaflex, so I’m hopeful that will offer more relief. I also have an order for a brain MRI since it has been a year since my last one and I’m waiting for the PT referral from my PCP. He would like to review the brain MRI with me and discuss Rituxan for Dec. If we move in that direction, it would continue to be two infusions (one set) every six months. When we walked me to the front at the end of the lengthy appointment, he paused and said if I have any questions or experience any new symptoms, I should definitely call.
So, I’m conflicted. And feeling guilty. Like I cheated and betrayed my original doctors. On the other hand, it was SUCH a relief to hear that I wasn’t imagining what was going on (an ongoing concern of mine) and to think that I may be able to see an MS Specialist who is actually accessible. I don’t want to be accused of doctor shopping. And I hate being dishonest. Right now I have appointments with both doctors in October and I am tempted to go see my current MS Specialist and have an honest chat with her so she knows what I did and why. In the meantime, I have to decide if I’m switching doctors for good or returning from whence I came.
Has anyone else faced this awkward choice? Any advice offered would be greatly appreciated. You can comment below, or email me directly at firstname.lastname@example.org.