New here and New to MS


I am new to MS and I’m currently in the process of being officially diagnosed. My docs are sure I have MS but we are doing all the things that need to be done to get an official diagnosis. (Which, btw, I never realized could take months or longer!)

A little but about my history so far:

I was diagnosed with Fibromyalgia 2 years ago after experiencing chronic pain and fatigue with no other explanation. But suddenly last summer all my symptoms became neurological. At the same time, I had to apply for medicaid which meant that I lost my PCP of 11 years who I trusted immensely. The first symptom I noticed was my memory went from amazing to non-existent in only a few months. I met with a new PCP and when I told him this, he proceeded to ask me Alzheimer’s screening questions. Since I passed all of those and since I knew where I was and what my name was, he told me that I was fine. Other symptoms were things like my limbs being tingly, issues talking and for some reason, my main hand could not make a number three and I lost mobility and strength in it as well. Then, in October, I woke up one day and one of my teeth (that I knew had a cavity) started hurting. So, I got it fixed but the next morning I woke up and ALL of my teeth on the left side had the worst pain I had ever felt. After 4 more dentist visits and 3 unnecessary dental procedures, I ended up going to the ER and I was diagnosed with Trigeminal Neuralgia. The ER ended up writing me a referral to the neurologist and I was able to finally see them in January of this year. I was being seen for TN but I took the opportunity to tell them about ALL of my symptoms. Up to that point, I had looked up all of my symptoms and it would say MS was a possibility but I’m not one who thinks of the worst thing so I just brushed it off, but after I got TN and saw it was an early sign of MS I started seriously considering that it could very well be MS. After I told them about all of my symptoms, they felt I should get a MRI. On the day of my MRI, they told me they would get back to me in a few days with results but I literally got a call an hour or two later. My neurologist called me on his lunch break and told me that they had found 20-30 lesions and that a good portion of those were demyelinating lesions. He told me that I likely have MS and referred me to a MS specialist. She ended up having me do a spinal MRI and there were no lesions there. Then, she wanted me to do another MRI in May to see if there was any change. If not, then she wanted to do a LP.

So, that was the plan but this weekend my MS had other plans. A week or so ago, I started noticing issues with my vision. I have pain in my eyes randomly. I keep noticing a dark tunnel in the corner of my vision. When I get up and the light hits my eyes, I tend to get a blind spot for a bit. And remember when you were a kid and you’d rub your eyes until your vision went out? I get that same sensation but I have to barely touch my eyes for it to happen. In general, I just don’t feel I’m seeing 100%. So anyway, on Sunday I was extremely tired and really dragged through Easter activities with family. When we got home, my symptoms started getting exponentially worse. My husband took a 2 hour nap and it might as well have been 5 minutes. I totally spaced out. I didnt feed my kids or even watch them. Both my hands started losing mobility and I wasn’t able to grab anything without dropping it. Then, when my husband started talking with me, I was unable to really talk without slurring or stumbling and I was unable to think clearly at all. At his behest I ended up going to the ER. They did another MRI and there was no change. So, best they could tell was that I was having a pseudoexacerbation and sent me home to follow up with my MS doc. I have appointment with her tomorrow and I have an appointment with an opthamologist on Friday to check out my eyes.

So, my guess is that since this MRI was unchanged that we’ll possibly do a LP soon and see what’s there.

1 Like

Hi @BeeBeeNgo. Just wanted to say hello, I am also new to the forum and still finding my way around the site, hence coming across your post. Sounds like you have made some progress with your diagnosis with perhaps a few more tests to do, lumbar puncture. As you say the journey can be a long one particularly getting the follow up appointments. How are you doing at the minute?