My name is Jeff and I was diagnosed with MS in 2011.
This is truly a bizarre disease with no rhyme, reason, or diagnosis. It is very difficult to try and understand, but I believe we can learn from each other by talking about our symptoms with one another. Support from others who are also battling with MS can help us deal with it in a better manner while also helping to achieve a better quality of life.
My story is similar to many of you who I have spoken to and live with MS: About a year after I was diagnosed I went to my primary physicians office and requested a copy of all my records. Looking back, it was scary how many clues were missed for before diagnosis. It took 15 years to finally get the correct diagnose, which came from a completely different doctor…”Another story.”
My first symptoms showed up in 1996 when I went to my doctor because I was experiencing tingling and numbness around my waste. It was diagnosed as possible shingles. Of course later finding out this is a very common symptom for MS patients, there is even a name for it “MS bear hug”.
Then I started experiencing numbness and tingling in my feet and legs. This symptom was the one that was most consistent but would sometimes be a little less survier. Then I would have numbness in my left arm that would show up and disappear.
I had gone to see my doctor on multiple occasions for urinary inconsistency and constipation. Actually went to see a gastrologist for constipation and came up with nothing? I know this was realated to my MS because it was happening to me before I started my MS drugs.
My doctor has given me two prostate exams because he thought I had an enlarged prostate. Again not the problem.
Bladder and bowel problems: absolutely one of the most discomforting, inconvenient and embarrassing symptom that I experience. My first experience with bladder issues was when I woke up because I could not urinate. I went to the emergency room where they inserted a catheter in me to release the urine. And boy did it release 2liters worth. Now I self catheterize ever evening and sometimes during the day.
Last but not least was my temporary blindness that I was experiencing in one of my eyes. It was believed to be caused by sinus pressure. Again da.
I use to believe that doctors new everything when it came to your health. I unfortunately had to learn the hard way. That was wrong. It is very important that you are happy with your doctor. They truly are interested in your well being, not just seeing you as a dollar sign.
At the time of my diagnosis there were things that were happening in my life that forced me to be more aggressive in finding out what was wrong with me. I was having a relapse and didn’t even know what it was the time. I had extreme difficulty walking to the point where I would need a cane for assistance. I would trip going up stairs and stumble like I was drunk. so I went shopping for a new doctor and found a fantastic neurologist I didn’t know it at the time that she specialized in MS. Got lucky!
When she gave me my diagnoses she told me she would attic my MS very aggressively. She had me on steroids within the first week and after explaining to me about different treatment options. We decided that Tysabri was the best treatment for me.
I started taking Tysabri right away and have had about 50 infusions. It has been wonderful for treating my MS. There is just one very bad side affect “PML” (Progressive multifocal leukoencephalopathy). It’s ironic that I used to watch commercial that woul ramble off the side effects and one of them would be death. I would laugh and say who would ever take something like that. When the benefits out way the side effects guess what its worth it.
I started exercising very slow but consistently Monday,Wednesday,Friday. starte with light weights and walking on a tread mill. I slowly increased my weights and started jogging. I now have been able to ski and have played softball. It has helped me with my balance and strength which is very impoertabt for people with MS.
Which brings me to why im starting this website: We need to gather as much information as we can to help make our lives better.
My symptoms that effect me the most for starters is the constant pain im in everyday.
Constipation and bladder issues. Anyone dealing with bladder issues can tell you the location of every public restrromm in major retail stores or resturaunts. I have to concentrate on just about everything I do from walking, jogging, working etc. I sometimes get vertigo in the mornings and I have to jump start my feet and legs when I get out of bed every moring.
