New Member - Flair Ups - Undiagnosed

Hey there,

I'm new to the group and want to introduce myself. My name is Stephanie, I am 25 years old and I am not diagnosed yet. I have been experiencing symptoms (numbness, tingling, muscle spasms, muscle weakness, tremors, cognitive issues and fatigue) on and off for about 5 years now (although very small issues in the very beginning). My mother is diagnosed with RRMS for over 30+ years. Growing up, I was her number 1 helper.

about two years ago, I experienced my two worst episodes; the first one which affected my entire right side, causing me to have trouble walking for about 4 weeks. The second episode affected only my elbow down to my hands, my knees to my toes and the bottom half of my face for about 4 weeks. I went to a doctor and had all the tests done, over the course of six month; CAT Scan, brain and clerical spine MRI with and without contrast on a 1.5T machine, Evoked Potentials eye and body, a Spinal Tap and a bunch of blood work. Everything has come back "normal". I went through physical therapy and occupational therapy to work on my walking, and that helped greatly, but I had to beg and plead for the doctor for the referral. The doctors gave up on me and after thousands of dollars of debt (even with good insurance) and no answers, I gave up on myself.

I started to feel better again though and tried to forget about that whole time, but still had lingering symptoms that I just learned to deal with. I started to eat much healthier and exercise regularly. I changed my career to one that I have more control over and could physically do if I got worse again. I focused on being stronger, mentally and spiritually as well, to combat depression.

Forward to now and I am having another flair up (muscle spasms, numbness, tingling & slight tremors all of which are in hands, feet and half of face, also fatigue). Luckily, I just started up with a new GP and it was so wonderful that he actually listened, it completely renewed my hope that I may find the help I need. He understood that other Dr's had dismissed my symptoms, and thinks I do have MS, especially since all my MS tests are at least 18 months old. He told me I should go find a new neuro, try them out until I find the right one who I feel comfortable with and will follow my case. He also prescribed me a 60 mg course of prednisone (small mg I know, but hopefully just enough to help with this flair up). Hopefully it will help! I am happy that I have had all those tests done in the past - now they will have tests to compare to in the future and also know that a lot of diseases are ruled out already. I understand that getting the diagnosis can take years and years, anyone else in the same boat?

Thanks for listening. I can't wait to get to know you guys

Stephanie

Post Edited (Kaleidoscope Artist) : 6/30/2014 6:22:45 PM (GMT-6)

Hi there,

Thanks so much for your response and the warm welcome!

I will take a look at that reference and hopefully find the right doctor through there.

My mom is worried and she thinks it points to MS as well. Her case was much different though - she had no symptoms until she was around 27 and then had two big relapses, with optic neuritis and paralyzation. She never regained her eye sight in that eye so she can't drive. Luckily she can walk though. Every MS test came back positive and about 1 year later she was diagnosed. She is worried that they will catch mine too late, but is hopeful that I am working with the doctors and that I will have someone to call if I wake up blind in one eye one day, like she did.

To look at the upside to the situation; I have a wonderful husband who is helping me through and I have my mom who gives me so much strength - I just look at her and smile at how far she's come.

Post Edited (Kaleidoscope Artist) : 7/1/2014 8:20:15 AM (GMT-6)

I'm sorry, I should have been more clear about that. She can legally drive, but hasn't because she feels unable due to the eye and also her right leg that she has MS problems with, too. She also lives in the city and has everything within walking distance and/or public transportation, which means there is less at stake in making that type of decision. At the same time though, I think that 30 years ago when she was diagnosed, she didn't receive the right resources. Over time, she got used to not having it and now, she feels it's been too long since she's drove that she would have to learn all over again. For myself, I live out in the middle of no where, and if I couldn't drive or felt unable that would be severely detrimental to my life and current existence. So I think it all depends on circumstance.

I'm glad that your diagnosis was swift and you were able to get the help you needed almost immediately, although I am empathetic that it must have felt like a world wind, everything all within those 5 weeks. It must have been shocking and scary. If you don't mind me asking, how old were you when you were diagnosed? Did you feel you were given the right resources after diagnosis? Did you have a support system? Please, do not feel pressured to answer if you don't feel comfortable.

Stephanie