I read your comment with interest.
It takes most people a very long time to get a diagnosis of MS. It did me. What’s interesting is this, what they call normal MRIs can, in fact, be abnormal ones. It depends on who is reading them.
Have you told your testers that you want a copy of your MRI results sent to you? I would also ask to receive a copy of the actual films, which you can get on CDs now. I always get copies of everything from every doctor I go see. This way, if you go see a Doctor, new or old, and they don’t have a copy of the film or the reports, you can bring yours and allow them to copy it. Don’t ever just give it to them. Make sure you get it back.
I used to compare my MRI films with those I found online.
The thing is, as we age, we all get lesions in our brains. It’s the preponderance of lesions in certain areas of the brain, whether they enhance or not, OVER TIME, that eventually leads to a diagnosis of MS. Or, if you have the right Doctor, it can also be given as a diagnosis when everything else has been ruled out.
Are you seeing a neurologist? I hope so. If you find a nice one, stick to them. They will be your most helpful doctors.
I’m sorry for your anxiety over the lack of a diagnosis. We all know what that is like. Most of us had to wait a long time with the same results, the questions on friends and family faces. They too start to question you.
As far as your friend on that trip, she probably did not realize how bad off you were until she spent a lot of time with you. Sad to say, her reaction to you is quite typical of people. Those people who reject you can be handled in one of two ways. You can try to educate them or you can just push on and leave them behind. By doing either one of these things, you have taken control of the situation instead of allowing the situation to take control of you and your feelings. I believe in this case, I would just push on. If she contacts you then that’s lovely. If she doesn’t contact you, that’s okay as well. Expect more of that and then you won’t be surprised or hurt. It is the arming of yourself with knowing what happens that protects you from debilitating emotional wounds that people can inflict upon you.
Read MS Life in reverse. Go to the earliest date and watch the progression. You will learn a lot in here. Comment and “like” along the way. It helps the blog. Also “Follow” the blog and you will receive your blog in your email.
We are here for each other. There is no need to feel alone. In the face of adversity, find people who are of “like” mind. This way you become a part of a community. It’s helpful. Be careful where you hang out. You don’t want to be in groups where the talk is mostly negative. You want uplifting sites. There is enough negativity going around.
Pity parties are okay but it gets lonely at a party where no one else wants to go. Have your party and then leave.
My site’s byline is called “Enabled by Disability”. Focus on what you can do instead of what you can’t do. There is much to be done in your life, particularly since you are still young. Recognize the good when it comes along, not the bad. Learn to develop a protective shell around you. Reach out but don’t be surprised if your hands are slapped away at times. That’s okay if it happens. It only means that they are not to be a part of your life.
Think of your disabilities as a rebirth. An ability to rebuild your life using new tools. Not many people are faced with what you are faced with but see it as an opportunity. Wake up and take small steps in moving forward.
I always tell people, “If you know you have MS despite what the tests reveal, then you probably do, or even some other form of neurological disease that mimics MS. Stop waiting for a diagnosis and live your live to its fullest despite having a neurological disease.”
In ending, I would like to use your comment as part of an E-Book that I am writing. There is no compensation for it, but if you want, you will be added as a contributor to the book. I won’t specify how you contributed so that people can’t pin that comment to you. The other thing is that I can use your initials as the commentator without being a contributor to the book. Either is fine.
If you would allow this, then I will have you sign a release form so that there is no legal problem in the future, not that I would expect there would be.
Thank you for your comment and I hope this helps.