Undiagnosed, possibly MS

Posted , 2 users are following.

I am a 27 year old white female and I have been suffering with an undiagnosed condition for the past 3 1/2 years. It first started out as this month long headache, I have always had headaches and migraines since I was 4 years old but these were different, I got no relief. Then it progressed to seizure like episodes that started out a few seconds and then processed to a few minutes. I would get this foggy feeling before and then my eyes would start rolling back and my eyelids would start flickering. I knew that it was happening but I felt like once it began I couldn't get out of the cycle. The seizure like activity went at bay when I started takng lamictal for a year. My doctor stated that I didn't have a seizure disorder just a glitch and hopefully a year on the medication would help. After the medication ran out I started doing acupuncture and that helped to for a while.

daily I still had chronic neck pain, headaches and the occasional numbness in my hands and dizziness. The seizure activity came once in a blue moon and I thought finally I had got everything to a manageable point.

Fast-forward to June 2022

I thought this would be a one ofaf, I was at work standing, I had my usual neck pain and headache, icepick headache electric shock feeling which went from my neck to my head, continued throughout the day, hands started to go numb, started to get dizzy and then my feet and legs started to get this numb, burning, tingling feeling all the way past my knees. I tried to walk to the lunch room and started to get more dizzy and disoriented with every step and legs were trying to give out. I had my husband pick me up early and went home rested my legs and feet all night took hours for the pain to go away.Thought that was weird but I didn't think much of it until it happened again a week later. Then,I started to figure out that almost all of my regular activities triggered this reaction. I work front desk so it's a lot of standing, can't stand my whole shift anymore, I can't even stand to doing my makeup anymore because I won't have a enough energy to make it out the door. I went to my GP and he thought that it might be MS or another autoimmune disease but he couldn't diagnose me, so he referred me to a neurologist. Waited 2 months for the neurologist visit for him to tell me that it's not a big deal didn't even listen to my concerns and stated that we would discuss my temporary leg paralysis in 4 months at our next appointment. Honestly, I am scared, I think that one day I will just wake up in a wheelchair because I have no function left in my legs.

I just want a diagnosis and not to be brushed off because I'm a young "healthy looking" female.

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  • Posted

    Hi Monroe, my name is Faith and I have had similar experiences with the Dr's and specialists. I also am undiagnosed but I've had multiple Dr's and even neurosurgeons tell me they think I have MS but that it's not showing up yet in the MRIs and that for 5 percent of MS patients it never does and the rest it can take years to show up. I am also fairly young I turn 34 in December. I have debilitating symptoms that have gotten worse with time and since a week ago suddenly excruciating pain in my neck shoulder arm and suddenly cannot use my left arm and my right one is also extremely weak. I went to two ERs and the neurosurgeon and finally have new mris of brain and cspine ordered waiting for insurance to pre cert which is ridiculous because I literally cannot function and I'm having to take vicodin just to be able to breathe without chest pain and sobbing nonstop. You need MRI scans. that is the only thing that will show lesions and you need one of brain and cspine. Please remember sometimes lesions take years to show up and sometimes they never show up at all. if you're with a neuro that won't listen to you and hasn't ordered mri then see a new one. we are very remote in our area in the mountains of NC so our options are severely limited. I would also recommend having an MS specialist read the scans. good luck to you and I hope it isn't MS but sounds similar to how I'm getting steadily worse and I hope you get some answers soon.

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