MS symptoms
Hello everyone. My name is Emily. I joined a few days ago to hopefully get some feedback on symptoms related to MS. I am not diagnosed but for the last 5 years I have been symptomatic. It started post partum with my third child. It started with an eye twitch that lasted 2 weeks followed by a headache that was persistent for 84 consecutive days. In those 84 days more and more symptoms arose. I lost 13 lbs in 2 weeks, extreme weakness in all extremities, uncontrollable shaking in my legs, internal vibrations (more specifically in my head and my legs), eye blurriness and double vision (was even diagnosed with optic neuritis a year later), electric like shock from my head into my face, jaw, ear and neck, facial numbness, heart palpitations, shortness of breath, fatigue like I've never experienced before. I get electric like shocks in my legs, almost daily. Numbness and tingling in my legs and feet and occasionally in my arms and hands. My left thumb trembles off and on. I get muscle twitches all over, I can even feel them in my intestines, as if a baby is kicking around. I've started mixing up words and stuttering, most recently I've noticed I'm having trouble chewing and swallowing foods I've never struggled with before. I've always been clumsy but trip over my right foot more and more these days. Dizziness gets me, frequently. I was hospitalized twice for what I believe to have been MS hug but was told by doctors it was anxiety. I've seen two neuros and have had two MRI's, one in 2018 and another in 2019. Both were clear. Neither Neuro wanted to do the spinal tap or a spinal MRI. They're choking it all up to be anxiety. I've never had anxiety a day in my life prior to all of this. Am I just losing my mind or do I need to find a good neuro who specializes in this disease? Sorry for the long post. If you've made it this far, I thank you for reading and for your feedback.
Hi @esmith9911 :-) Frustrating, isn't it? People who don't, for whatever reason, light up an MRI, generally aren't diagnosed with MS. That doesn't mean you don't have it, just that it's not showing up yet. I wouldn't push for a spinal tap - those are not easy or benign, but I would ask for an spinal MRI. Unfortunately, MS isn't one of those conditions that's typically diagnosed by symptoms - you literally need many (or multiple) lesions (or scleroses). Out of curiosity, have you ever done one of those genetic tests like 23andMe? If you have, you can upload your results to Promethease, or a similar service, and they'll let you know if you have any of the SNPs associated with MS. Check for mutations on rs3129934, rs3135391, rs6498169 and others. Remember, if you have those mutations it doesn't mean you have MS, but the likelihood does go up. This may help you if your neuro is forward thinking. I honestly hope you don't have MS. It sucks. A lot. Nonetheless I hope you find a label for your symptoms. Take care, @esmith9911. CYA 'round the forum!
@NeedMoreSleep Thank you. I've never done any kind of genetic testing. I will look into it. I know MS cannot be diagnosed by blood work but I was reading about where inflammation markers can be higher in those with MS, is this true? My sedimentation rates have been very high since 2018. Just wondering if it could be linked. I'll be seeing my Primary Dr again, soon. Hopefully he can point me to a great Neuro, my last two have been no help.