I'm a 29-yr-old with suspected MS. (There hasn't been a diagnosis yet.) I have an 8-yr-old daughter who is a high-functioning autistic and a husband with cerebral palsy. As you can see, we're a healthy bunch. lol I like movies, music, cooking, gardening, crocheting and reading. To learn more about my MS experience and symptoms, please read below.
In July of 2008, I started having neck pain and stiffness. I also noticed that I was very tired and achy so I went to the doctor. He did alot of blood work over the course of about a month. All it showed was that there was inflammation somewhere, but he said he couldn't find the cause. He gave me some antibiotics, but they didn't help. After a while I noticed some strange sensations on my left arm and hand. Occasionally it would feel like there was a spider web or something sticky on it. Then I noticed that I was getting clumsy whenever I used my left arm/hand. I would knock things over and miss things when I tried to reach for them. I also noticed that the sensation in my left hand had decreased. I told my doctor about this on my follow-up visit and he did some basic neurological tests. He noticed a difference on my left side so he sent me immediately for an MRI of the brain, but it came back clear. He sent me to a neurologist for more tests. The neurologist ordered another MRI for the brain and spinal cord and he did a nerve conduction test. He said he didn't see anything unusual, so he sent me back to my internist. During that time I started getting new symptoms. I would lose my balance while standing perfectly still and my coordination was off. I also would get buzzing feelings in my head from time to time. My speech would sometimes slur and I would get confused over simple things. I even had trouble using the wrong words for things. Like, I would say "shoe" when I meant "foot". I knew what word I wanted to say, but it would just come out wrong. But the worst was the neck/head pain. Nothing would make it stop. It would build up for a few days until it was so bad I couldn't stand it. Then it would stop. It didn't make any sense. Towards the end my blood pressure was high and my legs would get very swollen. Even though some of the symptoms were visible, I started feeling like my doctor thought it was all in my head. I didn't know why he would think that because I had been seeing him for several years and I only made appointments when I was clearly sick. He retired in October and passed me off to a new internist. By the time I saw the new doctor in November, the symptoms had started to go away. I told him what had been going on and he asked if anyone had mentioned the possibility of MS. I had considered it myself (based on lots of internet research), but none of the doctors had said so. He said he thought that's what it was and that we should wait and see if the symptoms came back. (He said it was either that or a lumbar puncture--to which I said, "I'll pass.")
May 2009 - The symptoms are back. My neck started to hurt, my left hand started feeling tingly like it was asleep, and I started having trouble using the wrong words again. I went back to the doctor and he referred me to a different neurologist. I saw him in June and he ordered a follow-up MRI of the head and cervical spine and an EEG. He also prescribed Mobic and a very small dose of Klonopin. The Klonopin knocked me out, so I couldn't take it regularly. After taking the first dose of Mobic I started seeing pink. I called, but neither the neurologist nor the internist knew what could have caused it. I saw the eye doctor the same day, but she said my optic nerve was fine. (I still see pink occasionally.) At the follow-up visit, the neurologist told me I definitely didn't have MS. He said he thought it was just stress and a possible vitamin B1 (thiamine) deficiency--for which he wrote a prescription. I reminded him of the past blood tests that showed a consistently elevated SED rate and asked him if stress or a vitamin deficiency could have caused that. He sent me for new blood tests including one for the SED rate. His office called a week later to inform me that the lab ran everything but the SED rate and that I needed to go back. I didn't go back.
March 2010 - The symptoms came back as the weather started heating up. This time I just did some yard work outside (trimming the hedges, planting flowers, etc.) and the tremors started in my left arm and hand. I would get clumsy--mainly with my hands. I also started feeling a lot of pressure on my bladder and some strange tickle sensations around that area. My OB-Gyn said it was a MS symptom and he referred me to the MS Clinic. In the months before my appointment I continued to have relapses where I would get tremors and have jerky movements like I had before. I also developed intention tremors in my hands and legs. For instance, if I drove for longer than an hour, my right leg would start shaking. I started seeing a chiropractor in September and it helped with the neck pain, but it didn't help with the spasticity. And the effects would only last about a week--sometimes less. I saw the neurologist at the MS Clinic in October. He was very thorough and asked alot of questions. I was sad to find that I failed several of the clinical neurological tests that I had previously passed. The doctor reviewed my last MRI to make sure nothing had been missed, but he didn't see anything. He said they had ruled out just about everything except MS, but they had to get proof before they could make a diagnosis. He strongly suggested that I have a spinal tap. I didn't want to do it, so he said we could do MRIs yearly until something shows up. Unfortunately he probably won't be able to see me again next year because he's cutting back on his schedule. So he referred me back to the last neurologist I saw. (Dang it!) He seems to think he's a good doctor, but I wasn't impressed. I haven't decided if I want to go back to him or try a different one.
Jun 02, 2009
Nov 12, 2013