Is It MS... Yes, No, Maybe So?
I've recently had a string of issues come about. Some symptoms are minor and go as quickly as they come. Others are lingering. The list is embarrassingly long, to where it makes me taper off when talking to my doctors. It makes me feel like they couldn't possibly believe me, or that I'm reading into things too much.
Currently I have brain fog, I can't find the word or words I'm wanting to say, or loose train of thought when speaking. And my concentration - forget about it. The other day, I agitatedly told the subway sandwich maker to put cookies on my sub, when she looked at me like I was nuts. I realized what I had said.
Pins and needles
I have the feeling of running water, that can change to a prickly bugs on a patch of my scalp behind my right ear, with numbness and tingling wrapping down my neck and in front of my right ear and cheek.
Pins and needles in odd places in both of my legs, but more prominent in my right. The random sharp poker stabbing is really fun too. This is nearly daily, especially if I'm tired.
Heavy tiredness and trouble walking
Speaking of tired... I get wiped out so easily. I can be walking just fine, and mid-stride, it feels like I have just stepped off a treadmill that I've been running on, that feeling of heavy tiredness or almost numbness after a hard run. And then after resting it will subside. But I haven't fallen, I have to be conscientious of my balance.
I've also had the feeling that my right foot hit the ground before I realize it should. Like the ground is not level. It doesn't quite seem like how foot drop is described, but maybe early onset? The only vision issues I've had is brief blurriness. But it's been when I'm tired. On a couple occasions I've felt an electric shock... in my head. Once it seemed to kinda run down my neck, and mid way down my back.
More off symptoms
These are my more off symptoms, I'm not quite sure if these ones fit for a diagnosis of MS:
I get bouts of dizzy or light headedness. Especially when I'm tired and/or when getting up too fast. It comes to the point I've passed out a few times, well, more than a few. I get tremors mostly in my legs. I also have a jerking motion, this can start in my leg or arm. It's effected my torso and head too, and they dissipate if I become still and rest, and then poof, I'm good. I notice this happens at high stress times, temp changes, exhaustion, or in transition. Like, if I'm walking and go to sit, my body will jumble a bit. This has been less frequent, but obviously noticeable. I also lost two toenails... my middle toenails just outta the blue, within a week of each other. I've had the sensation of urination, or that I pee'd myself, and I didn't. And a couple of times I didn't quite make it to the bathroom. I don't have the urge until its like... right now! But have a history of reoccurring UTI or bladder infections... kidney stones.
Times of high stress
I've been prone to Migraines for the last 15 years. All of the above has happened with in the last month, aside from kidney stones (knock on wood). Most sited have happened over brief periods throughout the years in different combinations. The last couple of times it's happened that stands out was during times of very high stress.
Here is where I get frustrated. When I start talking to my doctors, I feel maybe they run with anxiety disorder. Yeah, my nerves are shot, I am stressed. But when a symptom is flaring, you can't help but wonder what's gonna happen next. I'm always tired, and the feeling of tingling is annoying at best. And I do feel that my anxiety plays into it. But I feel whatever is happening it plays into it. I've had a full cardiac work up, and so far, so good. I had a clear MRI 3 years ago. She didn't rule out nor could give me the diagnosis of MS then.
My neurologist doesn't think what's going on is neurologically related, but is sending me for another MRI. I am also scheduled for an EEG, and then a neurological psychoanalysis cognitive test. I've had a slew of blood work, they threw in checking for Lyme disease this last round.
The words pierced me
I left my neurologist office feeling defeated. I've never felt disgruntled towards her before. But, I feel like there was a disconnect, I felt rushed, and I didn't get through all of my symptoms, and the full picture wasn't painted. But it seems to take forever to explain. But the words, "This doesn't seem like this is neurological to me," pierced me. It may not be MS, but would seem to be somewhere in the Neuro field!
Reaching out for your thoughts and insight
So, I guess I'm reaching out for your thoughts... does this sound like MS?
Aside from the MRI, has anyone else had this other similar testing? Has anyone had a clear MRI, and then have another a few years later that showed lesions giving definitive MS diagnosis? And has anyone had any of the symptoms that I identified as my one off's?
If you've made it this far, thank you for your time, and any insight you may have.
How many specialists did you see before finding "The One"?