Think I have MS
Posted: Tue Nov 27, 2012 5:48 pm
Hi everyone, I'm Jamie and I've not officially been diagnosed yet, but I am 95% sure that what I have is MS. I came on here because it is nice to know that there are people who actually understand what this horrible disease puts you through. That's one thing that no friends or family of mine will ever understand.
I've had problems for a while now. I had a weird numbing episode that presented like simple partial seizures in early 2009, but I don't think that was anything (it went away after starting and stopping Topamax). I had just started a very stressful job and couldn't sleep at night, so I think it was all stress induced. December 2010 brought on numbness in my left abdomen that traveled to my leg and foot and then disappeared after 3-4 months. I had left shoulder surgery in April 2011 and then in July 2011, my left arm and hand went numb. They thought it was related to the surgery, but after trying to figure it out, I ended up with a neck MRI that showed MS type lesions. My brain MRI had spots but nothing that would indicate MS (and I had one with the 2009 episode and absolutely nothing changed in the almost 3 years between MRIs). The arm/hand numbness finally went away, but before it did, I had a period where I felt electrifying sensations every time I bent my neck down. That has since gone away too. Early this year, my left leg started giving me trouble, and now, every time I get tired of walking (which doesn't take long anymore), it's like my leg practically won't work anymore and I'm just barely able to pick it up, move it in front of me and drop it on the ground. A couple months after that started came the bladder/bowel problems. I have terrible urgency with both and also frequency with my bladder (I usually go every hour and a half to two hours, except at night I usually only get up once and every once in a while, I can make it all night without waking up to pee). I also have horrible balance and I'm finding myself all the time losing my balance and having to grab onto whatever is closest to me just to stay upright. Now, within the past couple weeks, my whole chest area and around to my upper back has gone numb. I've gone to two neurologists, and the first one would only repeat unnecessary tests so I found someone who specializes in MS. Both of them say that my issues are minor (not when I'm a nurse and my leg is so bad that I don't know how I've managed to hide my deficit from my employers). I can't get the new one to even try to treat any of the symptoms I'm suffering. She keeps ordering expensive tests that I can't afford. When it came down to the spinal tap, I had to go through someone else but she was going to send a referral. When I gave the receptionist the info they needed, she kept stating that she can't do that. I then refused. In the three visits I've made there, they haven't gotten the billing right on anything (I switched jobs between visits and they either billed the wrong insurance or didn't go through insurance at all, leaving me with the headache, even though they had all the correct info). I've switched jobs again, so now I have to find another new neurologist, although I was going to switch anyway to avoid all the headaches of the last one. All this time I've suffered, and I've still gotten nowhere.
I bought George Jelinek's book and am in the process of reading it. It gives me hope that my life may not be totally over, but then I go to work and can barely walk back to my car at the end of the day (and there's no way to hide it from anyone who passes me by). I'm planning on giving the Swank diet a try once I finish my book in hopes that I won't have anymore symptoms. Plus, I'm pretty overweight so I can afford to lose a lot of weight as well. I do have a question about all this though. To those of you who have suffered through physical disabilities, do you think there is any chance that I will be able to recover from my leg problem? I can even handle the balance issue, but my leg problem is ruining my life and I'm at the point where I'm afraid I'm going to get fired from my new job because they're going to notice and then say I'm not fit for duty (and honestly, I'm not unless I have enough opportunities throughout the day to rest, but that's not an easy accommodation when you're a nurse). I can't afford to quit and take a desk job either. Plus, whenever my family talks about plans to go to 6 Flags or Disney World next year, I know there's not a chance in the world I could make it through those parks. After walking 1/2 mile, I can't hardly walk anymore. I used to be a runner too, and I was hoping that one day I could lose a bunch of weight and get back to that lifestyle, but that was before I realized I had debilitating neurological problems at the age of 27. Sorry this has been so long, but is there any hope of ever returning to a normal life again?
I've had problems for a while now. I had a weird numbing episode that presented like simple partial seizures in early 2009, but I don't think that was anything (it went away after starting and stopping Topamax). I had just started a very stressful job and couldn't sleep at night, so I think it was all stress induced. December 2010 brought on numbness in my left abdomen that traveled to my leg and foot and then disappeared after 3-4 months. I had left shoulder surgery in April 2011 and then in July 2011, my left arm and hand went numb. They thought it was related to the surgery, but after trying to figure it out, I ended up with a neck MRI that showed MS type lesions. My brain MRI had spots but nothing that would indicate MS (and I had one with the 2009 episode and absolutely nothing changed in the almost 3 years between MRIs). The arm/hand numbness finally went away, but before it did, I had a period where I felt electrifying sensations every time I bent my neck down. That has since gone away too. Early this year, my left leg started giving me trouble, and now, every time I get tired of walking (which doesn't take long anymore), it's like my leg practically won't work anymore and I'm just barely able to pick it up, move it in front of me and drop it on the ground. A couple months after that started came the bladder/bowel problems. I have terrible urgency with both and also frequency with my bladder (I usually go every hour and a half to two hours, except at night I usually only get up once and every once in a while, I can make it all night without waking up to pee). I also have horrible balance and I'm finding myself all the time losing my balance and having to grab onto whatever is closest to me just to stay upright. Now, within the past couple weeks, my whole chest area and around to my upper back has gone numb. I've gone to two neurologists, and the first one would only repeat unnecessary tests so I found someone who specializes in MS. Both of them say that my issues are minor (not when I'm a nurse and my leg is so bad that I don't know how I've managed to hide my deficit from my employers). I can't get the new one to even try to treat any of the symptoms I'm suffering. She keeps ordering expensive tests that I can't afford. When it came down to the spinal tap, I had to go through someone else but she was going to send a referral. When I gave the receptionist the info they needed, she kept stating that she can't do that. I then refused. In the three visits I've made there, they haven't gotten the billing right on anything (I switched jobs between visits and they either billed the wrong insurance or didn't go through insurance at all, leaving me with the headache, even though they had all the correct info). I've switched jobs again, so now I have to find another new neurologist, although I was going to switch anyway to avoid all the headaches of the last one. All this time I've suffered, and I've still gotten nowhere.
I bought George Jelinek's book and am in the process of reading it. It gives me hope that my life may not be totally over, but then I go to work and can barely walk back to my car at the end of the day (and there's no way to hide it from anyone who passes me by). I'm planning on giving the Swank diet a try once I finish my book in hopes that I won't have anymore symptoms. Plus, I'm pretty overweight so I can afford to lose a lot of weight as well. I do have a question about all this though. To those of you who have suffered through physical disabilities, do you think there is any chance that I will be able to recover from my leg problem? I can even handle the balance issue, but my leg problem is ruining my life and I'm at the point where I'm afraid I'm going to get fired from my new job because they're going to notice and then say I'm not fit for duty (and honestly, I'm not unless I have enough opportunities throughout the day to rest, but that's not an easy accommodation when you're a nurse). I can't afford to quit and take a desk job either. Plus, whenever my family talks about plans to go to 6 Flags or Disney World next year, I know there's not a chance in the world I could make it through those parks. After walking 1/2 mile, I can't hardly walk anymore. I used to be a runner too, and I was hoping that one day I could lose a bunch of weight and get back to that lifestyle, but that was before I realized I had debilitating neurological problems at the age of 27. Sorry this has been so long, but is there any hope of ever returning to a normal life again?