I’d like to welcome you to the site as well even though we all know it’s pretty sucky that any of us have to be here.
I’m one of the members who was diagnosed 4 years ago at the age of 57 and I can certainly identify with what must be some of the bewilderment you might be feeling.
The early days and months are definitely overwhelming and yes, I do wear medical identification in the event I fall out somewhere, and yes, I did “pack” confirmation of my diagnosis in my car for a couple of years in the event I was stopped for a traffic violation and couldn’t walk a straight line.
My primary symptom was difficulty walking—an ataxic drunk for about half a block before I thought I was going to fall out more or less captures it. At this point I no longer carry the diagnosis in my car as I can walk a pretty mean straight line and I’m still working, driving, etc. I’m lucky in that so far my hands have not been affected.
As for not knowing what kind of MS you have, it’s my understanding neuros frequently wait a year or two after you’ve been diagnosed to decide that. The first time I had difficulty walking was at the age of 53 (no diagnosis at that time other than the typical “stress”) so they put me in the “RRMS” category when I was finally diagnosed 4 years later—after I asked them to rule out MS.
Re: how often to call the neurologist. As Loobie indicated, over time you’ll become familiar with what’s your new normal and what’s a new symptom that might need attention. I think I’ve only called my neuro twice—once before I was diagnosed and once when I wanted to switch from Avonex to Copaxone (the side effects were just too much for me).
As to applying for Social Security Disability, if I were in your shoes I don’t think I’d hire an attorney at this particular point, but if you don’t think you’ll be able to work in the future you might want to consider actually applying now —reason why—if and when you are finally successful, they back date any payment(s) you’re eligible to receive to the date of your application.
Lastly, given my own personal interests, your age and if you haven’t already done so, I feel compelled to suggest that at some point you might want to consider hormone replacement therapy. The circumstances of my own diagnosis propelled me to read about hormones and MS and I think it’s just possible that normal hormone levels might help people better manage MS.
Here’s info from a survey, A pilot study of the effect upon multiple sclerosis of the menopause, hormone replacement therapy and the menstrual cycle
Of the postmenopausal women 54% reported a worsening of symptoms with the menopause, and 75% of those who had tried hormone replacement therapy reported an improvement.
The use of birth control has also been associated with delaying diagnosis, and, more recently, in a very small pilot trial, HRT was linked with improved neuronal health in post menopausal women with MS.
I posted links to a couple of articles about the risks of HRT in this thread on estriol
. And of course, feel free to pm me if you have questions. My work at the moment is fairly intense so it may take a while but I'll eventually get back to you.
At any rate I'm sure hoping things begin to get better for you in the near future and do take care.