Posted 5/21/2013 10:09 AM (GMT -7)
Tricia, a lot of that does sound familiar! First, let me say I've been told by my neurologist that I have MS, but he can't give the diagnosis until he sees white spots on an MRI. I've been diagnosed with fibromyalgia by a rheumatologist, but he said fibromyalgia is a sign of something bigger going on, and it won't get better until the root cause is found and fixed.
I have everything you've listed above. My symptoms started about 16 months ago with migraines, numbness/tingling in extremities, dizziness, vision problems, fatigue, and pain throughout my body. With my migraines I had extreme sensitivity to light and sound. My ears are so sensitive that touching my ear shoots pain into my neck and shoulder. Now I also have ringing in my ears that makes it hard to hear people if they aren't in the room I'm in, and it makes it hard to fall asleep (along with all the pain). I also slur my speech sometimes, and I just posted on another thread here that I feel like I sound drunk!
I can relate to your dexterity problems. You can see my hands shaking if I just hold them out in front of me, but it gets much worse when I try to hold something like a pen.
Before any of this started, I could count the number of headaches I had in my entire life on one hand. Not anymore. My migraines have been a lot better the past couple months, but at their peak, I lost vision in my right eye and saw flashing shapes. My doctors called it migraines with aura. I also frequently have blurred vision. It is like I can't keep my eyes focused on what I'm trying to look at, and I have to make a conscious effort to focus.
I seem to have all the symptoms of MS, but lately my joint pain and ringing in my ears have been two of the most prevalent symptoms, along with the problem with physical activity or exposure to heat making EVERYTHING worse. My MRIs showed a cyst on my pineal gland, measured at 7mm a year ago, but all of my doctors said that was normal. Then, a month ago, the cyst was measured at 8mm. I didn't think much of a 1mm change because I thought picture clarity/resolution could be to blame. When I saw my neurologist a couple weeks ago he said the MRI scanners can measure down to the tenth of a millimeter, so a change of one full millimeter is cause for concern. He still thinks I have MS, and he wants to repeat MRIs every 6 months until the spots show up.
I've also been diagnosed with level 3 seizure activity. Seems as though I have absent seizures; it looks like I'm daydreaming but I come to and I have no idea what I was doing or how long I was out of it. That goes along with the numbness and tingling throughout my body.
A lot of times I wonder how all these things could be connected, but also how could so many different things go wrong at the same time? Are we THAT unlucky? My legs are constantly so weak that climbing stairs is difficult, and going down stairs is scary because I feel like I could collapse at any moment. My legs a so weak and shaky that I have problems standing from a sitting position.
I was scared, confused, and pretty much shocked when I heard the doctor say MS. I found out my wife works with someone that has MS, and they are fully functional and happy since they're on the right medications. They only miss a couple days a year when symptoms flare up. I know it's scary, but know that the sooner you get to the root of your problems, the sooner you can start getting better!
I hope you're finding answers, and I hope my experiences can give you some ideas to talk with your doctors about.
"They don't think it be like it is, but it do." -Oscar Gamble