I am a 20 yr old female who has been experiencing a plethora of symptoms on and off for the last 7 months of my life, some have come and gone and others have stayed the whole time and progressed.
I started having symptoms January 2016. I started with pain on the right side of my head that lasted for 20-45 mins and would disappear, along with dizziness, and vision blurriness or double vision. This progressed in frequency and severity, and shortly after started having pins and needles, and really bad leg pain, often times at night. Then I started having bladder dysfunction and generalised weakness. I had my first accident in March of 2016 that has been related to this episode. Then the weakness was severe in my arms so bad I struggled carrying my materials to class everyday ( I am in art school, well WAS) and had to take breaks often since I had difficulty keeping my arm up long enough without it spasming and shaking really bad or eventually going limp. The tremors and twitching in my arms and hands started around then too. The head pains disappeared, but the bladder dysfunction and the weakness and the pins and needles became progressively worse. I started to have “episodes” of extreme muscle spascitiy and rapid eye blinking that looked much like seizure activity. During this time, I went through bloodwork, MRI testing, and spinal tap. the bloodwork came back normal except for elevated ANA levels. The Brain MRI showed 2 lesions, and the spinal MRI was negative. The spinal tap was also negative. Then the weakness got to the point where I was wheelchair bound for a few weeks, and had to progress to get my self to walk again with the help of my parents in law. The Drs. could not explain my symptoms and could not explain the episodes and tried attributing it to stress since I was planning my wedding, going to school, and working. They tried attributing the episodes to stress or the Cymbalta I was put on for Nerve pain a few weeks prior to the onset of the episodes.
Now, it is July. I am not cleared to drive due to the episodes, I am still having the pins and needles, and I just got out of the hospital again because the episodes have gotten to the point where they are more Catatonic in nature. I have speech problems, especially after the episodes, difficulty with things such as small motor skills like buttoning shirts, etc. I feel like I am becoming less intelligent, it takes longer for me to respond to questions and make conversations. Sometimes I will blank out for no apparent reason during a conversation, I will lose my train of thought. The last major episode I lost my ability to walk for days, and had to work my strength back up with still having balance issues. When I’m in the heat I feel really weak and like I am going to be sick, and I get weak all over so I have to limit my time outside. On occasion I will break out into a rash, and it is hot to the touch, but not itching or burning.The pins and needles sensations have increased in severity, and the head pains have returned. I also feel sometimes that a nerve is being constantly pinched, or my arm or leg is being squeezed. When I was in the hospital, they did an EEG and it came up as abnormal activity in my brain, but it was not a seizure and they do not know what it is. The bladder dysfunction is to the point where I constantly have to wear Depends. They did another MRI and they saw the lesions but said the current MRIs are not comparable to the previous MRIs since they were done differently (Im assuming because the first bout of my brain was without contrast and they were a bit blurry I guess, but I am not 100% sure why they are not comparable) so they cannot tell if the lesions have gotten worse for sure. I have seen a Rheumatologist as well and she ruled out Vasculitis, Lyme Disease, Sarcoidosis, and Lupus.
Now, I am back going to another Neurologist, and I just visited my primary and now he thinks it could be stress. But it does not make any sense to me. I am not able to work, or go to school, or drive. I cannot help support my husband and myself at all. I am honestly depressed and frustrated over all of this. I am in therapy and my therapist does not believe I am stressed. I feel hopeless and I’ve gone through countless number of blood tests, scans, EEGs, EKGs, etc with no definite answer. I feel I am getting worse and no one can offer me a solution of what is going on. They say it could be MS but its in the early stages if it is. I do not understand how it can be too early when I already have 2 lesions, and I am very symptomatic and it seems everything else has been ruled out. They also cannot explain the episodes, or my positive ANA levels.
When I was 15 I ws having issues as well, but not anywhere near this severe and I was testing positive ANA then. I was breaking out in a rash in the heat and had leg pain and dizziness / vision problems then.
I feel this is never going to end and I am going crazy. Could it really be from stress? I do not feel stressed, even back in January, I was really happy. I was in my dream school, and marrying a man who I love and cares about me a lot. But I am now really down and feel hopeless. I feel like there is no solution or end in sight to any of this, and I am only 20 yrs old. I just want to get my life back, where I can fully enjoy time with my husband doing activities again, where I can go back to school, and go to work, drive, had the amenities to life that made it more lively.
If anyone is or has gone through the same things, or can offer where to go or what to do, I would really appreciate it.