Well, here I am. I feared for years I'd be here, but I always thought it was paranoia--a lesson in how we should all listen to our intuition, no doubt. I'm 22, and I was diagnosed on 01/11/13. I didn't have to deal with ANY of the limbo what's-going-on-with-me stuff, I went from seeing my eye doctor for double vision on 01/09, and diagnosed on 01/11. I suppose that's good.
In December 2011-Janurary 2012, I couldn't feel temperature in my legs and feet. I chalked it up to a pinched nerve, and by the time I got a primary care physician, it went away. Around Thanksgiving, my legs went numb. My thumb on my right hand, slowly spreading outwards, was slightly numb as well. The numbness in my legs slowly spread upwards, growing with more intensity the closer to my feet, until I was walking on what can only be described as "cactus balls." After a couple of days, I saw my primary, they did some blood work and discovered I was severely anemic and B12 deficient. I went on iron and B12 pills, and they said if it wasn't gone in 30 days to call. It went away.
When it came time for my followup appointment in 3 months, the numbness kind of came back. I was experiencing mental fog, severe exhaustion, and my iron levels weren't back up to where they should be, so they scheduled some iron transfusions via IV. The numbness was spreading through my right half of my scalp, along my ears, across the right half of my abdomen, every day encompassing the right side of me. The day after they set up the transfusions, the double vision started. They did an MRI/MRV next day, and then the following day I was called and told the news that it all signs show MS.
My world shattered. My half-sister (who shares a mother with me, not a father), Megan, was diagnosed with MS when she was 21, 14 years ago. She is legally blind, suffering from tunnel vision, and several other things. She doesn't talk about her symptoms very much. My father's mother, who died before I was born, had MS. I was very familiar with the disease and what to expect, and if you're the kind of person to drive yourself nuts with research like I am, you put yourself through the ringer. I knew what to expect, and I had a trip coming 2 days after the call that I had been planning for 6 months. They told me to just go on the trip, if it's MS, it'll be there for treatment and visits when I got back.
The trip was awful. I mean, it was wonderful to go, but as far as the quality for me, it was awful. We went to the Detroit Auto Show for press days. Unfamiliar environment, unable to see, millions of people, loud noises, not a whole lot of places to sit. Over the course of the trip, the numbness got worse, I became less and less able to walk, my right leg would NOT function and the tremors in my right hand killed my fine motor skills. Not to mention, the entire time I'm there, I'm analyzing every symptom, every possible outcome, checking my insurance information and plan benefits every second I could on my phone, trying to plan every little minute detail. I hate surprises.
The trip came and went, I saw my new neurologist the day after I got back. Went over my MRI, spotted 9 lesions in my brain (there's a 10th one he's sure is there causing the optic neuritis but it's between the cuts). He's comfortable diagnosing it as MS without a spinal tap once I go through a couple more tests--I got a carotid ultrasound today, an MRI of my cervical spine done today, I have an EKG next week and some random blood panels, and then I'm diagnosed.
He put me on 3 bags of Solumedrol, and a 30 day taper of Prednisone. I'm on day 5 of the taper, and I can walk a lot better. The numbness is better. The tremors are better. The mental fog is lifting. However, my vision has not yet returned, my right knee is still locking up, and the random right arm attacks are still happening, although last night was the first time it happened since the 18th. The random arm attacks I speak of is, if I do something too fast, or get out of breath or something, my right arm gets excruciating electrical pains and feels like it's paralyzed. My arm touches my stomach during one of these, and I don't know who's touching me. My arm twitches, I lose all motor control, and Lhermitte's sign is in full effect. Takes about an hour/hour and a half to make it go away, looking straight up.
When I see the neurologist on 2/28, I'll be asking for betaseron.
Basically, I'm not sure why I'm writing this. My sister has been diagnosed so long that she can no longer relate to me, she deals with this illness by ignoring it, and she's onto secondary progressive, anyway. That approach won't work for me. I feel like I need some support. I'm dealing with the mental crossroads of when I should go back to work, when I'm overdoing it, should I take time off to let my body heal like I need to, or should I work through it considering I only get 12 weeks off in a rolling calendar year? How do I handle this? How do I stop worrying about the unknowns? When I lay on my back, I get horrible spasms, and during my MRI was one of the most horrific pains of my life. By the time it was over, the spasms had stopped, but when I got up from the MRI, they started, this time when I'm sitting up/standing! I'm just so distraught. I'm sorry for writing this enormous book.
TL;DR I'm new and this is scary.
In December 2011-Janurary 2012, I couldn't feel temperature in my legs and feet. I chalked it up to a pinched nerve, and by the time I got a primary care physician, it went away. Around Thanksgiving, my legs went numb. My thumb on my right hand, slowly spreading outwards, was slightly numb as well. The numbness in my legs slowly spread upwards, growing with more intensity the closer to my feet, until I was walking on what can only be described as "cactus balls." After a couple of days, I saw my primary, they did some blood work and discovered I was severely anemic and B12 deficient. I went on iron and B12 pills, and they said if it wasn't gone in 30 days to call. It went away.
When it came time for my followup appointment in 3 months, the numbness kind of came back. I was experiencing mental fog, severe exhaustion, and my iron levels weren't back up to where they should be, so they scheduled some iron transfusions via IV. The numbness was spreading through my right half of my scalp, along my ears, across the right half of my abdomen, every day encompassing the right side of me. The day after they set up the transfusions, the double vision started. They did an MRI/MRV next day, and then the following day I was called and told the news that it all signs show MS.
My world shattered. My half-sister (who shares a mother with me, not a father), Megan, was diagnosed with MS when she was 21, 14 years ago. She is legally blind, suffering from tunnel vision, and several other things. She doesn't talk about her symptoms very much. My father's mother, who died before I was born, had MS. I was very familiar with the disease and what to expect, and if you're the kind of person to drive yourself nuts with research like I am, you put yourself through the ringer. I knew what to expect, and I had a trip coming 2 days after the call that I had been planning for 6 months. They told me to just go on the trip, if it's MS, it'll be there for treatment and visits when I got back.
The trip was awful. I mean, it was wonderful to go, but as far as the quality for me, it was awful. We went to the Detroit Auto Show for press days. Unfamiliar environment, unable to see, millions of people, loud noises, not a whole lot of places to sit. Over the course of the trip, the numbness got worse, I became less and less able to walk, my right leg would NOT function and the tremors in my right hand killed my fine motor skills. Not to mention, the entire time I'm there, I'm analyzing every symptom, every possible outcome, checking my insurance information and plan benefits every second I could on my phone, trying to plan every little minute detail. I hate surprises.
The trip came and went, I saw my new neurologist the day after I got back. Went over my MRI, spotted 9 lesions in my brain (there's a 10th one he's sure is there causing the optic neuritis but it's between the cuts). He's comfortable diagnosing it as MS without a spinal tap once I go through a couple more tests--I got a carotid ultrasound today, an MRI of my cervical spine done today, I have an EKG next week and some random blood panels, and then I'm diagnosed.
He put me on 3 bags of Solumedrol, and a 30 day taper of Prednisone. I'm on day 5 of the taper, and I can walk a lot better. The numbness is better. The tremors are better. The mental fog is lifting. However, my vision has not yet returned, my right knee is still locking up, and the random right arm attacks are still happening, although last night was the first time it happened since the 18th. The random arm attacks I speak of is, if I do something too fast, or get out of breath or something, my right arm gets excruciating electrical pains and feels like it's paralyzed. My arm touches my stomach during one of these, and I don't know who's touching me. My arm twitches, I lose all motor control, and Lhermitte's sign is in full effect. Takes about an hour/hour and a half to make it go away, looking straight up.
When I see the neurologist on 2/28, I'll be asking for betaseron.
Basically, I'm not sure why I'm writing this. My sister has been diagnosed so long that she can no longer relate to me, she deals with this illness by ignoring it, and she's onto secondary progressive, anyway. That approach won't work for me. I feel like I need some support. I'm dealing with the mental crossroads of when I should go back to work, when I'm overdoing it, should I take time off to let my body heal like I need to, or should I work through it considering I only get 12 weeks off in a rolling calendar year? How do I handle this? How do I stop worrying about the unknowns? When I lay on my back, I get horrible spasms, and during my MRI was one of the most horrific pains of my life. By the time it was over, the spasms had stopped, but when I got up from the MRI, they started, this time when I'm sitting up/standing! I'm just so distraught. I'm sorry for writing this enormous book.
TL;DR I'm new and this is scary.
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