I'm not sure if this is in the right area, since I'm going through testing for diagnosis. If not, feel free to move and/or delete this thread.
My diagnosis journey has been ongoing since March 2017, but I've struggled with migraines and neuropathy in my right hand since I was in high school in the early 00's. After seeing three different PCPs and an (honestly useless) rheumatologist, my physician has me set for referrals with a (different) rheumatologist and a neurologist. After listening to my symptoms, she asked me the one question I was dreading the most:
"Do you have any family history of MS?"
I've worked with RRMS patients in the past, in a community similar to this one. It's their stories that made me really begin to wonder if there was more to the episodes of pain, fatigue, and general neuro issues (lack of sensation, hypersensitivity, migraines + vision issues, shooting pain) that I've been having, and was the impetus I needed to search for answers. It's the sort of mixed blessing you never want—it's great to finally be close to an answer, but you don't want it to be THAT answer.
I've heard a lot of what it's like living with MS first-hand, but I'm not nearly as familiar with what everyone has gone through when finally moving toward diagnosis. I have an appointment for a brain CT in the next few weeks, and will be speaking with my neurologist more in-depth then, but I want to know what to expect. I kept telling myself that I would be ecstatic to have a diagnosis, but now that I'm at the cusp of potentially finding the answer, I'm terrified.
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pearlsheep
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In my experience, it's the 'unknown' that creates stress... & FYI... stress + MS= not good!
Before I was diagnosed with RRMS (in 2001), I had no clue what was going on with my body...I just knew something wasn't right! I didn't feel 'sick'...but I also didn't feel 'right' either! Long story short, optic neuritis cinched the MS diagnosis...while I was waiting to hear the results of tests for Lyme Disease--which were, of course, negative.
Finally having a diagnosis answered a whole lot of questions ... & explained most of what had been happening with my body...that I had alternately ignored, adjusted to, or stopped doing. As my neurologist said, I made life adjustments & just kept right on going going going! Until...
KNOWing what it was/is gives one options!! For me, it was like, "OK--Multiple Sclerosis...here we go..."
Sounds like your doing all the right things to find answers.... knowledge is power & uncovers the unknown! Keep us posted ... we're all here for support & only a 'click' away!
I see my neurologist next Friday and half of me is scared to be diagnosed and the other half is scared she won't! I can deal with it, I can keep on keeping on how I can but not knowing the why is so hard! I had one verified attack and full MRI's last year. I am now in a second flare and I believe she'll be ordering new MRI's to compare. And I guess we go from there. I think I forgot to tell her about that "Incident" of 6 weeks or so when I was 20. Those records are so old, I don't know if they will "count" but I have it on my short list for my appointment.
I woke up October 6 2015 with everything numb from the hips down. I was still walking. I was diagnosed October 29, 2015. Then on November 10, 2015 I fell down at home and couldn't get back up. It was awful. For 2 months and 2 days I was in three hospitals and a nursing rehabilitation center. What a ride. But I over came it and was blessed to walk again. It's okay to be terrified. When I first got the diagnosis I had no idea what I was in for and to be honest I take it day by day because everyday is different for me. Just take very good care of yourself and take the meds they give you. I never knew it ran in my family until a month I was in the hospital and my mother talked to her aunt and found out that her cousin had it but back in the days they didn't have the meds and technology we have now a days. I know that stress is not good for MS. I wish you the best. But it's good to finally get answers then never knowing.
pearlsheep before I was diagnosed I never even knew what MS was. My vision suddenly went blurry on me so I had to see an opthamologogist who tried to tell me it was my antidepression medication that I had been taking for YEARS. After a small argument with him about that because my tests with him were fine, he sent me for an MRI of my brain which came up 'looks like MS' so I was sent to a Neuro who sent me for further testing to confirm this diagnosis. Blood work, spinal tap, Evoked Potentials test, another MRI of my spine. Then it was on to choosing a medication. I know its scary. We are here for you. Ask anything you want to know, someone has most likely been through it.
I was so relieved to be diagnosed. My big scare was suddenly, out of the blue, my legs would stop working. To find out why was such a good thing because, for me, not knowing and having my imagination run wild was the worst. Fortunately being on meds has lessened my symptoms.
pearlsheep I hear you, sister!! Have gone through these tunnels and am on the other side - bruised by - kicking and screaming. If it is any solace, pls read Falling down a rabbit hole here runneranu.wordpress.com/
we are co-travellers!!! You will be fine - most days!!
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