My MS Story - 17 Years Until a Diagnosis

So, I've been watching just a ton of these my ms story videos and, um ... It's been hard for me, but I'm going to try to make my own. This is I have to say about the third take on this just ... because it's ... it's just hard to talk about. But I'm gonna do it just because, uh, these "My MS Story" videos are just so awesome. I've been watching so many of them by different people out there, and there's so many things that connect with and then also things that just never even heard of and and just kind of blows me away. So, anyway, here's "My MS Story." I am 45 years old, and I've had ms for about 17 years. At least symptoms of MS for about 17 years but I've known that I have MS for three months. Three months now so it's all pretty fresh in terms of knowing that I have a MS but the experience is just like a long-standing thing through almost two decades: 17 years my life. So here's how that happened. I started having a pretty minor kind of peripheral numbness and tingling in my late twenties. My feet went numb one time for 2-3 months and I just kind of thought it was weird -- talked to people. My butt went numb for for a couple months. I thought it was because i was sitting too much or something. "You know, people's butts go numb!" Anyway, it was about 10 years ago that I first saw a doctor for this this these things when my arm went numb and I was thinking "well my arm ... you know it's a little more serious." So I went check that out the doctor thought i had muscle spasms and gave me some acupressure stuff to do and that was that And, uh, again it was a few more years after that ... five years after that that I got double vision. And and that's when it just kind of serious. You know a lot of MS symptoms start with eye problems and I've seen a lot of videos and read that literature whatnot. So I got double vision. It was a partial palsy of the (sixth) cranial nerve which basically leads to diplopia or double vision on one side so my right eye, this eye, just couldn't go all the way to the right. So I'd look to the right and see all kinds of crazy doubling and I looked left and things me okay. So I just looked to the left for a while i was doing pretty good. I made it through. I did see a doctor and they did all kinds of blood tests. Did a brain scan. Brain scan came up clear. Blood test came up pretty good. I had a low white blood count but other than that I was doing pretty good and at that point you know there's some mention "Well you know ms is one thing that could be ... but it could be lupus and it could be Lyme disease" ... and all these things so anyway. That got better after a couple months and I just kind of went on my way. And it was actually a couple years until i started having some some pretty pronounced numbness and tingling in my legs. Usually my right leg, right foot, and then also this crazy thing of numbness tingling and then also hypersensitivity. So like if I walked on carpet it was like walking on a bed of nails or the last shards or something so really really sensitive also numb and then also like crazy cold / hot sensation So it would feel like if I touched a cold wood floor with my right leg just feel like I was stepping a block ice. So sometimes I would go to the doctor for this and sometimes i just kind of a let it roll but I saw a couple neurologists and actually I saw one neurologist (neuro opthamologist) and she, she looked at my brain scan she did multiple brain scans overtime and said "absolutely Spencer you do not have MS. This is a rheumatic disease of some kind" or it's idiopathic, meaning no known cause. So I just kind of took that like okay at least it's not MS. I've got no lesions on the brain I'm good I just got some other weird thing and I seem to be doing okay i just get this numbness and tingling and pain. So I had verious symptoms ... if you look at my MS story over those 17 years I had a couple symptoms divided by many years in the beginning ... and then in recent years (five years) it would be like more like multiple exacerbations each year usually in the spring and summertime as is common with a lot of folks ... probably due to vitamin D going down and heat going up and whatnot and activity for me going up a lot in the summer time. This past year this past year I had some or numbness and tingling in my legs different sides the legs and I want to see a specialist down in st. Louis at an MS clinic and it did not take her long to figure out that I have MS. she did a spinal tap which for me was really really difficult like crazy difficult and i'm not gonna say a whole lot about that some people have a good experience with spinal tap and for me the lumbar puncture was ROUGH. In the end I was glad i did it i found from that it was looking pretty positive you know I had multiple bands and whatnot and the blood-brain barrier heavy breach there's blood my spinal fluid and then she went ahead and did a scan CT scan the CT scan no MRI MRI my spine and the spine show just a ton of lesions. so it turns out that I've got MS pretty active on my spine spinal cord obviously in the head too since I've had eye problems since then I've had two bouts of optic neuritis which is you know like lots of color vision and all kinds of cloudy messed-up stuff and then also I pain had one right i want to left . so i I've had to eye stuff but otherwise my mobility is really good I've been posting these videos about staying strong with MS just this idea of just just how much i feel really vital I feel like a vital healthy person most the time and I've just been trying to kind of convey that in those videos .. but overall yes symptoms we've gotten a little bit rougher I want to see another specialist of chicago for a second opinion at university of chicago and he said some different things in comparison the first doc that I saw .. the first MS specialist but you know they won't confirm i got a MS ... but they were in they were both very insistent that I needed to get on a drug regimen like you gotta to do this! you're nuts! you don't do this or you're gonna be pissing your pants blind in a wheelchair very soon! I haven't done that. I was recommended by the first doctor to go on copaxone by the second doctor to go on tysabri turns out I've gotta hi JC virus level so tysabri would probably wipe me out yeah you know if you got to hi JC you're likely to get that crazy brain infection and I'm not really into brain infection so i have not gone on tysabri or copaxone or any other drugs i'm actually seeing a third neurologist now here in my town and he's also just very insistent "you've gotta go on the drugs!" ... I haven't done that and i would say a few things about that kind of the end of the end of my story so far I've talked to a few people who have been on the drugs ... been on different drugs or where the same drug for a while and talk to some people who do not i talked with the gal friend of a family friend in California Sharon and she's had MS for 40 years so twice as long as I have and she she's not on the drugs and she's doing pretty well she's a Swank diet person i know a lot of people around the Wahls diet there are a lot of lot of folks with MS i think i've seen who are kind of treating it or attacking MS with a deliberate and deliberate forms of diet exercise, rest, low-stress, activity, and exposure to heat and cold that kind of thing so I'm trying to sort of think about the way that I've had a MS for 17 years and i'm actually doing pretty well i think in part because I'm an active person maybe I'm just lucky but I've been active person I've been a vegetarian the whole time and i have led a life without a whole lot of crazy stress and that kind of thing but I tend to overdo it physically have kind of given myself a year since my actual diagnosis I'm gonna give myself a year to say i want to get to know myself with MS I want to figure out my body and just my-my-my healthfulness and how it goes this next year if I know that I have a had MS for 17 freaking years have known it now i know it and I want to see what that's like before i start taking some serious drugs i haven't seen any MS drugs that look that great they all have you know like not great statistics of how well they work you know some people they seem to be pretty effective but for a lot of people as i see and hear a lot of stories of people all that suffering on the medications and pumping from one to the next tysabri is out for me because my JC load and any other drugs just don't look great so anyway I'm not on the drugs right now and I'm actually feeling pretty well and exercising every day I walk at least an hour and a half a day and I do other bodyweight exercises and I've been trying to move towards what i think is kind of a little bit more helpful living more of a wholefoods diet and more rest I little bit more sun exposure I've been getting more vitamin d3 supplement in the wintertime and then through the sun exposure i hope this summer and try to take it easy a bit more than I normally do and watch my exposure to the heat and the cold actually because both of those can kind of trigger these exacerbate exacerbations are those pseudo exacerbations I get those a lot my legs I'll have a pseudo exacerbation just from getting hot my leg will go numb and we'll come back to normal later in the day so anyway that's "My MS Story" and I really appreciate these MS stories out there on the web there just they've been really cool i think i've learned a lot from so that's what I have to share

Channel: metaspencer

Views: 193,577

Rating: 4.9245281 out of 5

Keywords: ms, multiple sclerosis, my ms story, diagnosis, medications, tysabri, copaxone, spinal tap, wellness, wahls, JC virus, titre, titer, metaspencer, neuologist, neurology, numbness, tingling, palsy, double vision, diplopia, optic neuritis, neuritus, optic nerve, bad vision, blurriness, hot leg, heat, cold, pain, nerve pain, symptoms, misdiagnosis

Id: zw5pPojRFRU

Length: 9min 43sec (583 seconds)

Published: Mon Mar 28 2016