Anxiety
My appointment with the neurologist is 3 weeks away. It seemed when it was scheduled (back in July) that it was so far away. I'm so afraid that the neurologist won't listen to me or take me seriously. My doctor specifically told me at my last appointment with her "Do not let them dismiss you, you need to make sure that they know everything." She is convinced that I have MS, but, of course, she can't diagnose it. That's the neuro's job.
I nearly got in a car wreck yesterday, with my kids in the car. It would have been a bad one. The other car tried changing lanes, except that I was already there. I was able to react quickly and brake hard enough to avoid a collision (we were mere inches away from the other car when we both stopped). Anyway, all I could think afterwards was what if my reaction hadn't been so fast? What if my leg didn't have enough strength to brake so quickly and so hard? I pulled off on a side street after and just shook.
This morning I had a dream that, at the time, felt very real. I thought it was real until I woke up. There was a horrible earthquake, I was in bed, my girls and I were home, but I was paralyzed and could not move or even call out to them to make sure they were ok.
None of this is helped by the fact that my husband is out of state for school (Today is his last day, so he'll be home tonight or tomorrow morning) and my Mom, who lives with us and helps me immensely (especially when I am not feeling well) is visiting her sister out of state for 5 weeks. So I've been the only "adult" around. My oldest daughter is 19, but she doesn't drive and is buried in college coursework, so it still feels like I'm the only responsible adult around.
I do not like not being in control. I don't like all the unknowns right now. I'm really struggling with this, and have no one that I can talk to that understands.
It sort of feels like some sort of cosmic cruel joke that my type A personality is being tested with the probability of a MS diagnosis, where I will continue to have no control over anything, including my own body.
Anyway, I just needed a safe place to rant. I'll be ok.
This sounds horribly familiar. A mixture of fear, dread and isolation, which is so real that it produces physical symptoms. It happened to me before diagnosis, over about seven months. Nothing since has approached it in awfulness. You have all the problems and none of the answers. This scenario is set to change with your upcoming appointment. I'm sure you know this already but do write down your symptoms with a time line: you'll find that the writing down is in itself therapeutic. Having someone with you to make a note of what the neuro says could be helpful as well, as you are likely to forget bits and pieces in the stress of it all. I guess it's likely that your next step will be tests to get the diagnosis. Your doctor is sure, but the neuro will want to eliminate other conditions. (I was told there were sixteen other possibilities). So - there will be time in the interim to get your head around what is available if it is MS. Are you familiar with the Barts MS Research blog? It's a really good place to find out about treatment options and if you read it daily you'll have a better idea of what's in store. They recommend hitting MS fast and hard with a powerful drug to effectively stop it in its tracks. There are examples from these consultants' clinics of people with MS who are living normal lives because they've got on the right medication. It's also clear from posts on this (shift.ms) site that many neuros are not sufficiently clued up on this latest thinking - a further reason for you to be. Lastly, you might find it helpful to go on the 'Thought Sort' section of this site, to get your head in the right place! Keep hopeful and big hugs x Kay
I carry around a pocket calendar (the kind you used to get at Hallmark but now you can get anywhere) and I jot down any problems I note, even if it's not MS related. I track my headaches this way as well (my neuro is an MS specialist but being a neurologist, he is also very well versed in headaches so he treats me for both). It is so helpful then, before my appointments with him, to go through the calendar and make a timeline of symptoms that I want to discuss with him. He said it was a great way to do it --- I don't miss anything that way, and it's easy to make sure I cover everything with him in a concise manner. It was great. I highly recommend it! I was lucky in that my symptoms started last August and I was diagnosed in January (with a "probable" diagnosis in November) so I didn't have to wait. But I know all about how fears can manifest into your dreams and into other physical problems. Currently I'm extremely overwhelmed with life and last night I had a dream I was hiking and was in a very precarious situation where one slight mis-step and I would have fallen to my death (we were on a rock, but as high up as an airplane, somehow). Very scary stuff. I really don't have any sort of advice other than please remember to breathe!! Also, I am often the only responsible adult in my house, my husband works weird hours and is MIA a lot of evenings. I have learned to let go. If the house doesn't get vacuumed - oh well. If I'm too tired to do the dishes - oh well. Can't walk the dog because my back is too sore? I just throw the ball for her outside to tire her out with minimal effort from me. You find ways and learn to accept that you're not super-human, nor should you attempt to be!! Be kind to yourself. Michelle