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I started out this way too Lori...It was 3 years before I had second Optic Neuritis in same eye...then 3 more years Optic Neuritis in other eye...then, I went into full blown numbness and progression of the disease...lots of sensory issues, numbness, burning, heat related issues, cognitive issues, speech issues...if I could've started on one of the treatments to slow the disease back then I would've...if I could tell you two things to do at this point, one would be to get on one of the treatments and two would be to change your diet to be as 'processed food free' as possible...as natural as possible.
I have been through several of the treatments...I did Avonex for 6 years and had no new lesions but decided to go off of it because of the constant headaches I suffered...went to Gilenya, but changed doctors because I moved and he thought it would be better to take me off that and put me on Tysabri, which I loved...but my body created antibodies against it, so I have just started Tecfidera and have gotten past the initial side effects...I did have some stomach upset and some face flushing but all that seems to have passed, just like they said it would, now that I have been on it for 5 weeks.
Best wishes for you as you go forward and navigate the world with your distinctive set of symptoms and your specific progression through it...mine progressed than they initially told me it would...the benign word was thrown around a lot early on, but once it started progressing, it really progressed to the point that I am on disability now. Take the best care of yourself possible, get as much exercise as you can muster and stay as positive as you can...all those things are things it took me awhile to get to...but I wish I had done sooner!
1 year, 1 month ago on Optic Neuritis – An early sign of multiple sclerosis?
@buggs I hope that your CCSVI treatment cures you forever! I looked into it but after several scans and a couple of doctor consultations, they told me my veins were clear and straight so that is not what the issue is for me. However, I am doing okay. Life is okay. When I first heard MS, I thought it was worse than a death sentence but at this point, I am used to the things that bother me and have learned to work around them, and life goes on!
1 year, 5 months ago on Optic Neuritis – An early sign of multiple sclerosis?
@lyoder7 I also have depth perception issues though my vision has returned to almost 100% after my 3 bouts with ON. I find it especially difficult to drive during dusk/dawn or rainy/snowy conditions as that seems to really confuse my vision...and also, if for example I am looking through a screen or a window with drops of water on it, or anything like that, my eye naturally focuses on the 'filter' - the screen or the water drops instead of the distant yard or street beyond it. Because of that, and the fact that I do live in a new place and I have cognitive difficulties and sometimes get lost, I don't drive that much anymore unless my husband is with me...
I started with Optic Neuritis in 1996, but MS was not diagnosed. An MRI was done, but there were no other lesions. I was given solul medrol for a week and after months my vision returned to normal...4 to 6 months. In 1999, I had Optic Neuritis again in the same eye and did solul medrol again. Another 3 months or so to regain vision. Nurse mentioned MS, asked doctor and he said the problem was that there was only that one lesion. In 2003, I had about a week of numbness in my legs, but with ongoing back issues, I thought it was my back. I went to a chiropractor who told me I should check with the neurologist that had seen me for the Optic Neuritis as he didn't think my back was the issue. I called, but was too busy to go in and the numbness faded...this was May of 2003...in September the doctor's office called me and said I really should get in for the MRI, so I went in and on a day when I felt fine, had no symptoms at all, they called me and asked me to come into the office. The doctor told me he was pretty sure I had MS and then did the lumbar puncture, etc. and made the diagnosis when I was fine. I thought. About 2 months later in November, I started losing the vision in my left eye and at that point began to have the numbness in my butt and legs...especially thighs. I also began to have severe ankle spasms on my right side. I did solul medrol again, and regained that vision in about 3 - 4 months. The remaining symptoms remained. I began to be really aware of how my vision would fade now in both eyes as I got too warm. I went on Avonex January of 2004. Numbness continued to worsen. In 2008 I had a relapse that suddenly caused incredible burning of my skin when I get the slightest bit warm...in fact, I get hot LONG before others, usually around 68 to 70 degrees. Higher than that and I hurt really bad and if I keep pushing myself through, I get incredibly tired. We were able to move from Dallas to Colorado Springs which has helped but the disease has progressed to the point that I can no longer work due to the heat issue, the cognitive issues, and most recently in the past couple of years, strength and balance issues. I also have a curvature of the spine and incredible depression/anxiety issues that add to the disability diagnosis. I started Tysabri in January 2013...I take 2700 mg. of Neurontin a day to help keep the numbness/burning/spasms to a minimum and Cymbalta for the depression issues.
Ralph (Strangis) and Razor (Daryl Reaugh) in the Dallas Stars market are the best out there...I moved to Colorado and still go and listen to those guys online because they make listening to hockey fun. Imagine what a job they had to do when first moving there in 1993...coming to a world that was like 'what is hockey?' and they had to step back and teach a whole new audience about the game, the players, the coaches, the history...and they have done a marvelous job so that now it has been 20 years since the North Stars became the Dallas Stars, and though the team is struggling, these two keep it going strong! I like to listen just to hear what Razor is going to come up with next - he is quite entertaining!
1 year, 5 months ago on 5 NHL announcers who deserve more airtime
I have MS, and after the last big, bad relapse I had which was in 2008 I was left with serious nerve pain. I have it every day and it starts around mid-day with numbness and burning in my butt which spreads to my thighs which then feel as if they have been severely sunburned. If I am fatigued or warm (above about 70 degrees - seriously!) that pain begins to spread to other areas of my body...I will feel it over the trunk of my body where it feels like I have been punched in the stomach and also have a bad sunburn, to my arms, the sides of my breasts, my back and finally my face and scalp...it is worse on the right side of the trunk of my body but has spread to the left side in recent years. I take Neurontin at 2700 mg. a day (600mg. 4X daily with 900 mg on last dose) which helps, but does not stop it. I take Cymbalta which is an antidepressant and it has helped the depression, but not sure if it has helped the nerve pain at all - can't tell any difference. I cannot take Lyrica as I am allergic, and the only other thing the doctor told me I can do is exercise and stay as active as possible which supposedly will help it, but so far, doesn't seem to do so. I stay as cold as possible which drives everyone else around me crazy. I cannot sit in a room at a 'normal' temperature with people for long without becoming miserable, and if I have to stay in that environment, I will be 10X as fatigued by the end of the day. Moved from Texas to Colorado last year to help, and it helps except for the summer...so in the next couple of years hope to move farther up in the mountains at a high altitude to get even cooler!
1 year, 6 months ago on What is neuropathic pain? Do you suffer from nerve pain?